Non-profit Research Accelerator Curable to Host its 2016 GAME CHANGER Gala and Mike Ditka Day in Pittsburgh on July 30 | Curable

This black-tie event will increase awareness of primary sclerosing cholangitis (PSC) and fundraise to build cures for PSC and other complex diseases

PITTSBURGH, July 21, 2016 /PRNewswire-USNewswire/ -- Curable, a non-profit research accelerator that applies engineering approaches to medicine, today announced that its annual GAME CHANGER Gala will be held from 5:30-10 p.m. ET on July 30 at the Heinz Field UPMC Club in Pittsburgh, PA. The after-party, featuring trumpeter Rico DeLargo, will continue until midnight.

During the Gala, Curable will present awards to board member Coach Mike Ditka, organ donor advocates Jared and Cameron Wohl of the Wave Set, and transplant surgeon Dr. Byers "Bud" Shaw, Jr. for their contributions to the PSC community. Mayor Peduto will also attend to officially proclaim July 30 "Mike Ditka Day."

There are an estimated 50,000 patients with PSC in the U.S. today. No one knows what causes this disease, and there are currently no effective medical therapies.

Robert Redford's son, James Redford, will be the keynote speaker sharing his story of living with PSC, having two liver transplants, and making a documentary film about organ donation. Jahine Arnold, former player for the Pittsburgh Steelers and Green Bay Packers, will speak about his struggle with PSC. Arnold is the only NFL player, other than Walter Payton, to have been diagnosed with PSC and will need a liver transplant to survive as his disease advances.

Three Broadway stars – Philip Hernandez, who played both Jean Valjean and Javert in Les Miserables, pianist and conductor Michael Eisenberg, and Alli Mauzey, who played Glinda in Wicked – will entertain the 500+ guests.

Further information about the Gala and registration details are available at https://www.signup4.net/public/ap.aspx?EID=SAVE62E&OID=130.

Sponsors of this year's event include Art for Yinz, the Carroll Family Foundation, Chicago Bears, Chicago Cubs, Color Perfect Printing, Deep River Snacks, Disney, Ditka's Restaurant, doTerra Essential Oils, Event Source, Giant Eagle, ITxM, and the Jewish Healthcare Foundation. They are joined by Kristabella Wedding and Event Photography, Larry Klu Sports Art, Lovas Photography, Mallory's Massage, Matt Meade Photography, Paints by Kait, Pittsburgh DJ Company, Pittsburgh Penguins, Pittsburgh Steelers, Regeneron, Seven Springs Mountain Resort, Sycamore Gas, The Beauty Xpert, The Physical Therapy Center, Thomas Jordan Gallery, and UPMC/UPMC Health Plan.

About Curable
Curable is a non-profit research accelerator that applies engineering approaches to medicine. It was founded in 2014 as SAVE JON to build a cure for primary sclerosing cholangitis (PSC), the life-threatening disease afflicting CEO Dr. Lisa Boyette's younger brother Jon. In the process, Curable created an organizational blueprint that can be successfully applied to other diseases affecting underserved patient populations. For more information, please visit www.curable.org or follow us on Twitter @curable_org.

Curable Contact:
Lisa Boyette, MD, PhD
(412) 447-0900
lisa@curable.org

Media Contact:
Lisa Osborne
(206) 992-5245
Rana Healthcare Solutions
lisa@ranahealth.com

Logo - http://photos.prnewswire.com/prnh/20160705/386407LOGO

SOURCE Curable

Related Links:

http://curable.org/

Source: https://www.prnewswire.com/news-releases/non-profit-research-accelerator-curable-to-host-its-2016-game-changer-gala-and-mike-ditka-day-in-pittsburgh-on-july-30-300301591.html

Pick-up: BioSpace, Diagnostics World

###

65 Percent | AV Club

Cast

Cameron Wohl (Cameron Wohl) Jared Wohl (Jared Wohl)

Directors

Michael Altino, Jon Altino

Synopsis

Cameron Wohl was diagnosed with a rare and potentially life-threatening auto-immune disease at the age of 13. It wasn't long until doctors revealed that there was no cure and he would inevitably need a life-saving liver transplant. 65 PERCENT provides an intimate look at one family's journey through the most challenging time of their lives. This captivating portrait exemplifies the integral roles that love, selflessness and unity play in overcoming adversity when the future is vulnerable and time is crucial.

Source: https://www.avclub.com/film/reviews/65-percent-2016

###

Crowd Funding: What All Nonprofit Organizations Should Know | Bridget Hartnett, CPA, PSA & Ron Matan, CPA, CGMA, PSA

Synopsis

This white paper is intended to help educate nonprofit leaders, both staff and volunteers, in the benefits of crowd‐funding campaigns for their organizations. It will begin with a definition of crowd funding and a brief history of the concept before exploring the elements of a successful campaign. An example of a nonprofit that has integrated crowd funding into their development mix will be cited.

Table of Contents

 1.     What Is Crowd Funding?

 2.     What Are the Characteristics of a Successful Campaign?

 3.     What Does a Nonprofit Organization Need to Know?

 4.     Example of a Successful Campaign: Introducing The Wave Set

 5.     Conclusion

 6.     References, Citations and Resources

 7.     About the Authors

 8.     About Sobel & Co.


1.    What is Crowd Funding?

This white paper begins with the definition, and the historical evolution, of crowd funding. Technology has drastically influenced emerging new trends as the landscape for giving and investing has changed and the old formulas are being altered or replaced. Until recently, funds and investments were generated in both the corporate and nonprofit communities by asking a small number of people for large sums of money. Today, crowd funding is creating a dominant presence by embracing a reverse process, so that funding a for‐profit venture or a charitable project is done by raising smaller amounts of money (starting as low as $1) from a larger number of people, typically via the Internet.

 Given the downward trend in philanthropic giving based on the negative influence of the 2008 recession, crowd funding provides a unique chance for individuals to be involved at a monetary level that is comfortable while still feeling like they are making a difference and having a stake, in the success of the nonprofit’s mission.

 As a result, this funding innovation has sparked the imagination of the nonprofit world, just as it has in the for‐profit sector. It has quickly become a global phenomenon, enabling thousands of people to have a financial impact on an organization in previously available only to the very wealthy.

 

Historical Perspective on Crowd Funding


Crowd funding, however, is not quite as new a concept as one might think. In fact, the case can be made that in some form or another it has been around for hundreds of years. In the 17th century, collective fundraising was used to finance publications that were planned, but not yet published. More currently, in 1949, iconic comedian Milton Berle hosted the first telethon for the Damon Runyon Research Foundation raising over $100,000 in 16 hours– which would be the equivalent of about one million dollars today. In essence Berle’s initiative was a nonprofit crowd‐funding venture.

 So it is that today’s modern notion of crowd funding has deep roots in the age‐old business model that nonprofits have always relied on, generating funds through micro‐donations to achieve a particular goal or mission.

The term, crowd funding, was actually coined by Michael Sullivan in August 2006 when he launched fundavlog, a failed attempt at creating an incubator for videoblog‐related projects and events including a simple funding functionality. This scheme was “based on reciprocity, transparency, shared interests, and, above all, funding from the crowd.” However, it really began to be used in earnest a few years later when Kickstarter adopted it in 2009.

But it was the 2003 launch of ArtistShare that marks the actual birth of the modern crowd‐funding platform, as it is known now. Between 2003 and 2011, more sites popped up, helping raise $89 million worldwide in 2010, $1.47 billion in 2011, $2.66 billion in 2012 and $5.1 billion in 2013 and, according to “Cracking the Fundraising Code,” 30% of the $5 billion that was crowd‐funded went to social causes. Interesting data published by the UK’s Crowd Funding Centre indicates that more than $60,000 was raised on an hourly basis via global crowd‐funding initiatives during the month of March 2014 and 442 crowd‐funding campaigns were launched daily during that same month!

 The numbers speak for themselves. But the novelty and wild success of today’s crowd‐funding practice lies, not in the concept that many small donations can make a big impression, but rather in the Internet technologies and a cutting edge mindset that are giving it new momentum.

 

How Crowd Funding Actually Works

 Crowd‐funding projects range across a wide spectrum from community‐based (nonprofit) projects that offer no financial gain to sophisticated corporate campaigns that promise monetary payback for investors.

 Recognizing all the alternatives that crowd funding makes possible, the nonprofit sector is most interested in what’s called Donation, or Charity, crowd funding. This option invites people to invest in a project because they have a passion for the mission and goals of the nonprofit organization and/or the people involved. Unlike a for‐profit campaign, the return on investment in a charitable campaign is intangible. It is not based on a monetary reward but on the personal satisfaction that comes from being dedicated to ‘doing good’ in the community.

 Crowd funding can help nonprofits, but the key is to remember that it is not meant to be an ongoing campaign and it is definitely not intended to take the place of other channels like galas and luncheons, golf outings, web donations, direct mail, 5K races, and personal solicitations. It is a short‐term tool that should be integrated into a balanced mix of funding opportunities, generating immediate interest in a fun and novel fashion but not replacing other more traditional avenues.

 For example, crowd funding is an excellent way to raise funds for a specific objective, such as: pay for a new piece of equipment, make improvements on a facility, launch a new service, or even fund a cool video for the organization’s website. With an end date and a dollar amount established, and genuine excitement around a tangible, meaningful goal, it is fairly easy to engage the support of existing loyal followers and encourage them to tell their friends. Through the power of social media and personal interaction, the crowd grows exponentially–even among those who know little about the organization but who are inclined to pitch in. Most often funders are motivated by having a connection to a cause with a greater purpose, inspired not only by what the organization does, but by why it does it and who it helps.

Crowd funding can be a great way to supplement the existing fundraising efforts of a nonprofit organization. But like every great idea, it requires a strategic plan to implement it effectively.

 

Getting a Strong Start

 The first thing to do is write a description of the project, outlining exactly how it will benefit both the organization and, ultimately, the community it serves. This is the official ‘pitch’ that will be used to substantiate and promote the crowd‐funding campaign.

 Next, identify the audience that is most likely to support the campaign. To be most effective and efficient, it is important to understand the community that comprises the main focus of the campaign. The needs, expectations, and values of the target ‘crowd’ play a key role in a crowd‐funding campaign, which is always dependent on the passion and enthusiasm of the funders.

 Thirdly, decide what types of rewards will be offered to entice funders. This ‘incentives’ component is integral to any crowd funding–especially for nonprofits that are not offering any financial gain but, rather, providing personal gratification for supporters. The cost of the reward is not significant. In fact, recent studies reinforce the notion that supporters of a charitable crowd‐funding campaign neither want nor anticipate a gift in return for their generosity. They just want something that helps them feel connected to the community they are supporting. Be sure to ask if they want to be listed on the organization’s website, because even a little bit of public acknowledgement can go a long way. In addition to a thank‐you note or other sincere show of gratitude, items like a letter of appreciation from a client who is a recipient of the nonprofit’s services can provide an emotional impact. Small items having an imprint of the nonprofit’s name and logo on them, such as headbands or bracelets, work well as a reward–as does having the opportunity to meet the leaders of the nonprofit, taking a tour of the facility, or engaging in some distinctive experience connected to the group or the community it serves. Being creative is a central pillar for a crowd‐funding campaign. Out‐of‐the‐box thinking is encouraged, so every option should be considered. This may even mean developing an affiliation with a local artist who can design something relevant and distinctive as a perk for campaign supporters, or forging a strategic alliance with a high‐profile individual or group in the community that can build interest with followers.

Every successful online campaign relies on visual elements to tell the story and capture the imagination and emotions of donors. Crowd funding is no exception. Short but powerful videos are essential for success, along with plenty of pictures that strengthen a powerful connection between the nonprofit and its supporters.

The marketing plan must include outreach to the appropriate community through personal messaging, face‐to‐face informal get‐togethers, website and email announcements, and


 

2.    What Are the Characteristics of a Successful Campaign?

 extensive use of social media. Inherent in the definition of crowd funding is reliance on generating interest with an eager, giving crowd. The more people who are touched by the message, the greater the levels of giving–but this doesn’t happen by itself. There must be a consistent, well‐planned ‘push’ with a message that ignites the desire to give, sent by supporters who have clout and can leverage their individual influence.

But the marketing doesn’t end there. Even as the campaign moves past the launch date, building a nonstop buzz goes a long way toward sustaining the campaign and generating new energy. Since it is universally agreed that givers feel good about supporting successful campaigns, loyal supporters should be encouraged to make their donations as early in the campaign as possible, thereby providing the much‐ needed initial momentum that can then be sustained when others jump in.

There are no real limits during a crowd‐funding campaign! Organizations should use every available avenue to make their case, integrating both traditional and nontraditional promotional methods to explain concisely and carefully how the generated funds will be used, along with a clear, easy‐to‐follow, call to action. Experienced fundraisers know that if they don’t make the ’ask,’ potential donors will be less likely to pull the trigger and make the contribution. The call‐to‐action drives the contribution. Lastly, using a well‐respected and trustworthy financial system, such as PayPal or a platform that securely accepts all major credit cards, makes the giving process fast, uncomplicated, and safe.

A nonprofit organization that incorporates crowd funding into its development plan can experience a number of benefits. The first, and most obvious, is the cash generated for a specific purpose. Secondly, and almost as crucial, the campaign generates awareness for the mission, exposing the organization to new supporters who have the potential to turn into raving fans. Although short in duration, a crowd‐ funding campaign is very engaging and very personal. As such, it often provides the group with a chance to: 1) strengthen its brand and reputation, 2) expand its footprint, and 3) attract new volunteers.

Over the last few years, the depth of benefits from crowd funding have gotten the attention of nonprofit and civic leaders and, according to Beth Kanter at bethkanter.org, “The nonprofit’s use of crowd funding is growing exponentially, with many nonprofits jumping on the bandwagon attracted by the potential of finding new supporters. But as crowd‐funding practices mature and become a valuable part of the nonprofit fundraising toolkit, there is a need for standards and expectations. David Neff and his colleagues have launched a crowd‐funding Bill of Rights to get the discussion going.”


All the excitement and conversation has resulted in a rise of crowd‐funding websites designed for the nonprofit sector. Some of the sites, such as Fundraise.com, CauseVox, DoJiggy’s Pledge software, Razoo.com, CommunityFunded.com, rockethub.com, onevest.com and Fundly were conceived especially for nonprofits, while others, like Crowdrise, Kickstarter and indiegogo, have been used by charities, even though they are not nonprofit‐centric. (Please note: this is just a sample listing of available crowd‐funding sites).

In a joint study, published in June 2014, between Toronto, Canada’s York University and Universite Lille Nord de France in Lille, France, two types of reward‐based crowd funding were identified depending on the website. One type is called Keep It All where the entrepreneurial firm (or possibly the nonprofit) sets a fundraising goal and keeps the entire amount raised regardless of whether or not they meet their goals. The second type is the All Or Nothing platform where the entrepreneurial firm sets a fundraising goal and keeps nothing unless the goal is achieved.When selecting the best option, each nonprofit must take all of the distinctions into consideration. Although features and expectations differ from site to site (some sites require a video for example, and some do not), all of the sites invite any nonprofit to set up an online fundraising campaign, most often in order to support a unique, mission‐driven project, using the sites’ capabilities. In each instance, a fundraising page with narrative, videos and pictures supplied by the nonprofit organization forms the basis for the campaign. Often this page can link to social media sites or to the organization’s website. The crowd‐funding website accepts donations using its own credit card processor, thus removing the burden for record keeping and processing from the nonprofit. With the platform for giving in place, the main role played by the nonprofit is to push traffic to the site to quickly generate the necessary funds.

The idea of crowd funding is especially appealing to nonprofits because it is a cost‐effective way to reach out to the community, combining the power of a base of current supporters with new prospects, to raise funds and make friends. But, there are a few suggestions that can help nonprofits avoid derailing:

 

  • Choose an obtainable goal. Unfortunately, the masses are not searching the Internet every day looking for meaningful nonprofits to support. To meet the stated goal, the nonprofit has a huge responsibility for identifying and offering incentives to donors. Having unrealistic expectations regarding the scope and reach of the organization can lead to disappointment or even failure. Set a goal that is do‐able and empower supporters to share the campaign with their own networks.

  • Create a video. Although the value of a video was mentioned previously in Section 2, it is worth referencing again. This is a vital component of the campaign because: it is one of the best ways to introduce the cause; is easily shared by friends across the

 

3.    What Does a Nonprofit Organization Need to Know?

 Internet; and can be relatively inexpensive to produce, especially given the powerful return.

  •  Get loyal supporters to commit early. Again, while touched on in Section 2 above, the importance of an early commitment cannot be over‐emphasized. Many donors gain confidence in the campaign and jump on the bandwagon after they see others giving. Make sure everyone who is connected to the nonprofit knows about the campaign before the launch to ensure a fast start.

  • Tell a good story. Nonprofits that showcase their efforts can increase the success of their crowd‐funding campaign. They can seize the opportunity to give an accounting of the number of: families fed at the soup kitchen, people who found meaningful work, elderly cared for in a sensitive way, homeless who reclaimed their lives, children given a chance at a decent education, people helped during a natural disaster, animals saved from kill shelters, or the support for a neighborhood art museum, park or library. This is the time to share their accomplishments.

  • Prepare in advance. Because crowd‐funding campaigns have a limited duration, the time invested in the preplanning phase enhances the chance of success. Email alerts, phone calls, web announcements, Facebook posts and Tweets should all be done well in advance of the launch. Committed donors need advance notice to alert their own friends and colleagues. Time is of the essence!

  • Follow up. Supporters want to know how the campaign is doing. The crowd that is making the campaign thrive often feels ownership and responsibility for its success, so they are hungry for information. Continual updates and news regarding the campaign’s progress keeps everyone actively engaged throughout the entire process. Thanking early supporters and offering new incentives may even encourage them to return and give again. No matter what, the more connected they feel, the more likely they are to take ownership and care about the outcome.

 

 

Introducing The Wave Set

The Wave Set is an organization dedicated to giving others a second chance at life by spreading awareness and education on the importance of organ donation. While cultivating a brand that correlates with this cause, The Wave Set helps create a culture of love, unity and selflessness, thus showing the world that “We Are Vital to Each Other.”

The Wave Set was founded by two brothers, Jared and Cameron, who, ironically, were born three years apart, to the day. However, their shared birthday isn’t the only fascinating connection between them. At the age of 13, younger brother Cameron was diagnosed with a rare autoimmune disease, primarily affecting his liver. About a decade later, in August 2013, things took an unfortunate turn when his doctors explained that they had spotted a tumor on his liver and his disease had been consistently progressing. A liver transplant had become necessary in order for him to continue his life, but, due to the high demand for organs and regardless of his critical state, Cameron was nowhere near the top of the list. When doctors posed the idea of undergoing a living‐donor transplant (where someone donates 40‐60% of their liver, and both the donor’s and recipient’s livers regenerate to full size) Jared jumped at the opportunity. As fate would have it, he was approved as a living donor.

From that moment on, these brothers knew that they had a calling. It was their mutual decision to dedicate themselves to making a significant impact on individuals by encouraging them to learn more about becoming an organ donor. Their very personal experience became a driving force behind their commitment to form a new nonprofit organization named The Wave Set.

The Wave Set is a grass roots campaign to raise awareness by planning and executing in‐ person speaking engagements, hosting college visits, and facilitating live events nationwide. This campaign would also be a platform for sharing the stories of people all over the world who face the harsh realities of the need for a life‐saving organ transplant. But first, the brothers needed to generate revenue to fund these plans. With the date for the transplant surgery set for February 11, 2014, they had to get started quickly.

So, in December, just two months before that surgery, Jared and Cameron launched a successful crowd‐funding campaign designed to raise money for the production of a documentary titled 65 Percent, depicting their family’s journey through the transplant experience. The title of the film derived from the fact that Jared donated 65% of his liver to Cameron.

 

How to Plan a Crowd‐funding Campaign

As Cameron and Jared considered various fundraising options, Jared suggested they consider crowd funding, a vehicle he had seen work successfully for many of his fellow singer/ songwriters. Instead of reaching out to private funders, they agreed that this do‐it‐yourself model would be the fastest and most effective platform to help them reach their goal.

The first step they took was to do the research. Taking time to consider all aspects and thinking strategically in their decision‐making created a solid basis for their campaign. After looking at a range of possibilities, they considered the two sites that were most widely used and had the best results for successfully funded campaigns. There were two key differences between the alternatives. Kickstarter offered a fixed‐funded campaign. Using this approach, the campaign has a pre‐established timeline and financial goal. If that goal is not achieved within the designated time frame, the organizers do not collect any funds. It is an “all or nothing” situation. Indiegogo, the site Cameron and Jared ultimately chose, offered the choice of fixed or flexible funding. Under the flexible option, they could set the length of the campaign (30 ‐45 days) and the financial goal. In this scenario, if they fell short, they would still receive the funds they collected, with a higher percentage going to indiegogo. They were confident that their friends and family would be enthusiastic about the campaign and that they would hit their much‐needed goal. But given the very small window of opportunity they had before their surgery, they had no time to waste and no appetite for gambling on the outcome, so they opted for a flexible platform which would enable them to get started even if they did not attain the full funding.

Every step of the way, Cameron and Jared made careful, strategic decisions. They began by creating a great visitor’s experience. They created a compelling title that would define the essence of the campaign; they wrote a one‐two sentence description that was a synopsis of their concept; they created a brief video that would tell their story and actively engage the audience; and they wrote a full, detailed description of their expectations for the campaign. They grabbed the audience’s attention, and kept it, with an inspirational video that answered questions about who, what, where, when, and why. And then they made a connection through other photos and a deeply personal narrative.

To experience the full emotional impact of their video, click here: http://youtu.be/ FxB41MNQ4Mk

The final component to consider in any crowd‐funding campaign is the perks, or incentives, that are offered to supporters. People contribute because they are committed to the cause, but nonetheless, they often want something tangible that links them to the goal. Cameron and Jared prepared a tiered list of incentives they could provide–recognizing that if they spent too much on the perks, they would never fund the film. They drafted a budget, taking into consideration film production costs, overhead expenses (including the costs of rewards) and processing fees. They did this before finalizing their financial goal so that the dollars they aimed for would accurately reflect all of the expenses they were about to incur.

4.    Case Study of a Successful Crowd Funding Campaign: An Interview with Cameron and Jared Wohl?

 With a specific budget in mind, they decided to set up their incentives this way:

 

  • For a $5 contribution, the donor received a thank you and a Wave Set sticker

  • For $25, the donor received a thank you, a sticker and a digital download of the film

  • For $50, the donor received all of the above and a DVD of the film

  • For $75, the donor received all of the above and a Wave Set tee shirt (this enabled the brothers to jump‐start their Wave Set apparel line as well!)

  • For $100, the donor received all of the above, but the tee shirt was replaced with a hooded sweat shirt

  • For $200, the donor received all of the above and all the branded Wave Set apparel items (tee shirt, sweatshirt and cap)

  • For $800, the donor received all the above and was listed as an honorary producer in the film

  • For $1000, the donor received all of the above and was listed producer of the film as an executive

Cameron also hand‐painted eight skateboard decks as a special gift for significant contributions.

While some donors selected ‘no perk,’ many of them enjoyed having something to demonstrate their association with the group.

But there were still more strategic steps to implement before the campaign could go live. They needed an aggressive marketing plan. Every crowd‐funding campaign’s success is based on reaching as many people as possible, capturing their attention and their donations. It was no different for The Wave Set. In advance of the campaign taking off, they began broadcasting to their networks, using Facebook, Twitter, Instagram, LinkedIn and personal emails and texts to get their audience primed for participating on launch day. Even The Wave Set’s new Facebook page was built before the campaign started, increasing the excitement with ‘teaser’ information that got everyone’s attention but avoided providing too many facts or details. Up until now, Cameron’s 10‐year struggle had been personal; a medical condition known only to his family and close friends. Suddenly, hints of what he was enduring were shared as Cameron used his own Facebook page to fill everyone in. On December 14, they pulled the trigger.

Their success over the next 30 days was based on their intense commitment and their effective use of social media. They were accessible, creative and energetic. By week three they had made it to the front page of indiegogo as one of the site’s top five featured campaigns–a spot they earned by continuously posting fresh content, uploading new photos, keeping everyone informed with a flow of new information on their Facebook pages and getting friends to post on their own Facebook pages. All of this highly targeted activity led to a high number of views, which is the indicator indiegogo relies on, in part, to measure a campaign’s ‘go go’ factor prior to highlighting it.

While some donors might have stumbled upon their campaign, or browsed the indiegogo site, the vast majority came in response to personal appeals from Cameron, Jared and their family and friends. Cameron boldly Tweeted the founder of inidegogo and some of her followers. After sending about 250 Tweets, four responded–and one of those was the founder herself!

After 30 days, Jared and Cameron had hit their goal. They gathered the donations they needed to fund the filmmaking project which they believed would enable them to start educating their youthful audience, raising consciousness about the dire need for organ donors (18 Americans die every day waiting for an organ transplant and every ten minutes a new name is added to the list) and, as a result, increasing the number of registered donors across the country. Interestingly, 47% of adults, 150 million people, who favor organ donations are not registered themselves!

 

Words of Wisdom

Jared and Cameron agreed that there were key characteristics of their campaign that distinguished The Wave Set and led to their crowd‐funding success. Here is their advice:

Be genuine

Be transparent Do your research

Think and act strategically

Have a great story to share that will convince others to invest in you

Be sure you have a personal network that is powerful, receptive and supportive

To learn more about The Wave Set, visit their site at http://www.thewaveset.com

5.    Conclusion

  

While gaining in popularity because of its many benefits, especially the breadth of reach, crowd funding is hard work. A good amount of up‐front effort (as can be seen from The Wave Set case study) and full buy‐in from the organization’s leaders are requisites for any kind of measureable success.

In the Stanford Social Innovation Review, authors Erin Morgan Gore and Breanna DiGiammarino remind nonprofit decision‐makers that people generally contribute to crowd‐ funding campaigns for these four reasons:

 

  • Participation: They want to be part of something bigger than themselves

  • People: They care about and believe in the people running the campaign and want to support them

  • Purpose: They believe in the campaign’s goals and want to help move those goals forward

  • Perk: They want a reward for their contribution

 

Taking those four Ps into careful consideration, when used strategically, crowd funding can: help nonprofits build meaningful connections in the community; engage new followers and re‐engage existing loyal supporters; communicate the impact of their mission; build a recognizable brand; open up new networks; and generate funds, as well as awareness.


6.    References, Citations and Resources

Some of the information, survey results and other data included in this white paper were researched at the following:

 

Crowd Funding – www.Wikipedia.org

“What is Crowdfunding?” Daily CrowdSource

“Using CrowdFunding to Raise Money for Your Nonprofit.” www.Nolo.com

“How Start Ups Can Tap Cash from Ordinary People and Give the Prospect of Huge Profits In Return…What is Crowd Funding and How Does it Work?” Amy Andrew. www.ThisisMoney.co.uk. July 2013.

“You Hear Lots About CrowdFunding, But What Is It?” Mark Koba. CNBC. October 2013.

“What Is Crowd Funding and How Does It Benefit the Economy?” Tanya Prive. Entrepreneurs. www.Forbes.com. November 27, 2012.

“How It Works – Crowdfunding for Nonprofits, Social Entrepreneurs and Change‐ makers.” Start Some Good.

“How to Use Crowd Funding Sites to Raise Money for Your Non Profit.” Joe Garecht. www.the fundraisingauthority.com

“How to Successfully Crowdfund for Your Nonprofit.” Ben Lamson. www.huffingtonpost.com

“Five Best Practices in Nonprofit Crowdfunding.” Robert Wu. April 4, 2014. www.bethkanter.org

“Nonprofit Storytelling for Crowdfunding and Online Giving.” Vanessa Chase. The CauseVox Blog.

“Crowd Funding for Nonprofits.” Stanford Social Innovation Review. Erin Morgan Gore and Breanna diGiammarino. May 22, 2014.

 

Free Resources:

Indiegogo’s Campaign Field Guide and Cause Handbook Video on the process: www.rockthepost.com/tour/pledging Ben Lamson on Twitter @BenRLamson

StartSomeGood.com Crowdfunding 101: Free email course. This free 9‐part email course is designed for nonprofits, social entrepreneurs and change‐makers who want to raise funds the smart way.

 A special thank you to Cameron and Jared Wohl for sharing their story, their insights and their advice on crowd funding.


 

7.    About the Authors

Bridget Hartnett, CPA, PSA

Bridget Hartnett, CPA and PSA, is a Member in Charge of Nonprofit and Social Services Group at Sobel & Co., with a depth of experience in nonprofit accounting which she draws on to provide high‐level services for clients.

 

Experience in the Nonprofit Niche

Bridget spends most of her time working closely with clients in the social services and nonprofit areas, including educational institutions. She supervises the audit engagements conducted by Sobel & Co. for the Cerebral Palsy Association of Middlesex County, the Youth Development Clinic of Newark and Catholic Charities of the Trenton, Metuchen and Newark dioceses, Freedom House, and C.J. Foundation. In addition, she handles all of the firm’s education audits and holds a New Jersey Public School Auditor’s (PSA) license. Bridget is also responsible for reviewing and overseeing the preparation of nonprofit tax returns.

 

Philanthropic and Social Service Commitment

Bridget carries her commitment to social services beyond the work place to include her personal involvement in several areas, such as St. Benedict's school in Holmdel where she volunteers for projects and special events as needed, as well as gives her resources and time to various children’s charities, such as the New Jersey Chapter of Make‐A‐Wish and others. She is also a volunteer with professional business groups in the New Jersey community, including Monmouth Ocean County Nonprofit Committee and the Western Monmouth Chamber of Commerce where she is Treasurer and helped to found the successful Young Professionals’ Group and currently serves as Co‐Chair and founder of their newly formed Nonprofit Committee.

 

Professional Credentials

As a licensed Certified Public Accountant in New Jersey, Bridget is a member of both the American Institute of Certified Public Accountants (AICPA) and the New Jersey Society of Certified Public Accountants (NJSCPA). Bridget is an active member of the New Jersey CPA Society’s Nonprofit Interest Group.

 

Educational Background

Bridget graduated with her Bachelor of Science degree from Montclair State University.


 Ron Matan, CPA, CGMA, PSA

 Ron Matan is the Member in Charge of Sobel & Co.’s Nonprofit and Social Services Group. In this role he brings a unique blend of public accounting and business acumen to every client engagement. A key member of Sobel & Co.’s Leadership Team since joining the firm in 1997, Ron works primarily with nonprofit organizations, including United States Department of Housing and Urban Development (HUD) projects, A‐133 engagements, and low‐income housing tax credit programs (LIHTC).

 

Experience in the Nonprofit Niche

Ron is responsible for the firm‐wide quality of this practice area and is the firm liaison for the AICPA’s Government (Nonprofit) Audit Quality Center. With over 35 years of experience in public and private industry and accounting experience with all types of nonprofit and social service organizations, Ron offers a unique blend of knowledge and insight to these specialized engagements. Ron is a Certified Tax Credit Compliance Professional and is listed in the Guide that is circulated to all State Agencies Allocating Tax Credits, as well as the Internal Revenue Service. He has taken courses in advanced training for peer reviews and performs peer reviews of other accounting firms. Ron also holds a New Jersey Public School Auditor’s (PSA) license.

 

Philanthropic and Social Service Commitment

Ron is a member of the Board of Directors of the Neighborhood Health Services Corporation, headquartered in Plainfield, New Jersey, where he serves as Treasurer and Chairman of both the Finance and Audit Committees. Ron also serves on the Union County Educational Services Foundation Board. Ron is a former Treasurer and Board Member of Kids Peace Treatment Centers for emotionally disturbed children, located in Bethlehem, Pennsylvania.

 

Professional Credentials

Ron is a Certified Public Accountant licensed to practice in New Jersey, New York and Pennsylvania. He is a member of the American Institute of Certified Public Accountants and the New Jersey Society of Certified Public Accountants (NJSCPA). Ron has been elected to PKF North America’s Nonprofit Committee, and in June 2004, he was appointed to the New Jersey Society of Certified Public Accountants’ Peer Review Executive Committee. Ron is also a member of the NJSCPA’s Nonprofit Interest Group.

 

Educational Background

Ron is a graduate of Kings College in Wilkes‐Barre, Pennsylvania, where he received a Bachelor of Science Degree in Accounting.


8.    About Sobel & Co., LLC

Sobel & Co. is a regional accounting and consulting firm located in Livingston, New Jersey, that has been providing nonprofit and social service organizations in the New Jersey/New York metropolitan area with audit, accounting, tax and advisory services since its inception in 1956.

The firm is distinctive in its approach to the nonprofit community because of its sincere passion for serving this sector. As it says on the Sobel & Co. website, “We work with the nonprofit sector because we feel good helping those who do good; we have a passion for helping nonprofit organizations achieve their mission of helping the world's most vulnerable.”

The firm currently works with more than 200 nonprofit organizations with revenues ranging from $100,000 to over $75,000,000. Based on this depth of experience, the professionals in the nonprofit group are keenly familiar with the issues facing nonprofits and they apply this knowledge to bring added value to every engagement.

As a further demonstration of the firm’s commitment to the nonprofit community, several complimentary programs are offered throughout the year. These include quarterly webinars, roundtable discussions and an annual symposium on timely and relevant topics.

We also encourage you to visit our website at www.sobel‐cpa.com and click on the nonprofit niche page. Once there, please browse our resource library where you will find published white papers along with a variety of articles. We provide a Desk Reference Manual for Nonprofits, a Survey of Nonprofit Organizations that contains interesting insights on nonprofits, a wide range of tools and benchmarking data, a monthly e‐mail newsletter that offers relevant information to organizations and links to other key sites that are valuable for the nonprofit community.

Source: https://silo.tips/download/crowd-funding-what-all-nonprofit-organizations-should-know

###

Temple Event to Encourage People to be Organ Donors | Laguna Niguel News (Marie Eckberg Padilla )

BRAVO

Temple Beth El of South Orange County at 2A Liberty in Aliso Viejo is holding a free screening of the documentary “65 Percent” at 2 p.m. on Sunday. The film tells the story of brothers Jared and Cameron Wohl and their journey of undergoing a live organ liver transplant when Jared donated part of his liver to his brother when he [developed a tumor.] The New Jersey brothers, who are the nephews of one of the Temple Beth-El congregants, will be at the event to discuss their documentary and their nonprofit organization The Wave Set, created to encourage organ donations. View the trailer at thewaveset.com

Source: Laguna Niguel News, Oct 15, 2015, Page 9, Laguna Niguel, California, US; https://newspaperarchive.com/laguna-niguel-news-oct-15-2015-p-9/

####

Aliso Viejo and Laguna Niguel 'Bravo' column, week of Oct. 15 | The Orange County Register (Mary Ekberg Padilla)

GOLF TOURNEY RAISES $16,000 FOR BOYS & GIRLS CLUB

The Boys & Girls Clubs of Capistrano Valley’s 16th annual golf tournament raised more than $75,000 for the nonprofit’s operations, said Ron Sipiora, director of resource development.

The club annually serves more than 2,700 kids at its facilities in Aliso Viejo, Rancho Santa Margarita and San Juan Capistrano.

The 18-hole tournament, sponsored by Tuttle Click Capistrano Ford, featured more than 124 golfers at the El Niguel Country Club in Laguna Niguel.

It also featured a silent auction, dinner and hole-in-one contest. Tournament champions were Don GascoigneCody GascoigneGeorge Windsor and Bill Ryan.

 

STYLIST TO HOLD CUT-A-THON FOR CANCER research

Adriana Lopez, hairstylist at Amoré Salon in Laguna Niguel, is kicking off a cut-a-thon fundraiser for The Jill Foundation to support breast cancer research between 9a.m. to 3 p.m. on Sunday. Lopez, who was diagnosed with breast cancer in 2012, received a donation from the foundation during her battle.

Last year, she was able to raise about $5,000 for hairstylists with breast cancer.

The event is at 30242 Crown Valley Parkway in Laguna Niguel. The Jill Foundation was created in memory of Jill Etzold Kester, a hairstylist from Orange who died from breast cancer.

To make a donation without a haircut, mail a check to Lopez at the salon. No appointments are necessary during the cut-a-thon.

TRAILBLAZER AWARDED WITH INNOVATOR OF THE YEAR AWARD

Newth Morris, co-founder of Telogis Route and Navigation of Aliso Viejo, is among the six honorees who received the Innovator of the Year Awards, presented by the Orange County Business Journal.

The awards recognized Orange County trailblazers during a 400 people luncheon in Irvine.

Telogis provides a cloud-based connected intelligence software platform that impacts the way businesses optimize their mobile assets and critical data.

GOLFERS SWING IN $220,000 FOR ST. MARGARET

The Tartan Tee-Off at the El Niguel Country Club in Laguna Niguel raised nearly $220,000 for St. Margaret’s Episcopal School’s Financial Aid Endowment. More than 100 golfers participated in the annual tournament presented by the Kao Family Foundation. The winning foursome included Travis NelsonGeoff RosenhainJames Bishop andBrent Kuhn. The tournament planning committee included John AgamalianKen CarpenterMike GottliebPaul MarronTim McElfishand Marianne Payne.

 

LOCAL PERFORMERS IN SADDLEBACK COLLEGE MUSICAL

Kierston Bjerke of Aliso Viejo is among the cast members in the musical “Dogfight” by the Department of Theatre Arts at Saddleback. The Dogfight production has music and lyrics by Benj Pasek and Justin Paul, the book by Peter Duchan and the play is based on the Warner Bros. film and screenplay by Bob Comfort. The show runs until Sunday. For tickets, visit www.saddleback.edu/arts.

 

TEMPLE EVENT TO ENCOURAGE PEOPLE TO BE ORGAN DONORS

Temple Beth El of South Orange County at 2A Liberty in Aliso Viejo is holding a free screening of the documentary “65 Percent” at 2 p.m. on Sunday. The film tells the story of brothers Jared and Cameron Wohl and their journey of undergoing a live organ liver transplant when Jared donated part of his liver to his brother when he got cancer. The New Jersey brothers, who are the nephews of one of the Temple Beth-El congregants, will be at the event to discuss their documentary and their nonprofit organization The Wave Set, created to encourage organ donations. View the trailer at thewaveset.com.

 

DOCTORS-TURN-WAITERS RAISE FUNDS IN HOSPITAL EVENT

Thirteen physicians volunteered as servers during the 17th annual Dizz’s As Is fundraising event, which pulled in more than $16,000 for the Women’s Hospital at Saddleback Memorial this month. The doctors served appetizers, cocktails, entrées and desserts to about 80 guests in Laguna Beach. Servers included: David VogelSteve GarberDennis PhillipsKenson LoDan KouwabunpatMargaret Van BlerkMelissa BushLauren HackettBrian KoperekKen JamesDinh VuJames Kay and Ron NaglieHugo Folli, vice president of ancillary services, took on the role as bartender, and hospital CEO Steve Geidt of Laguna Niguel stepped up as live auctioneer. The event was launched by the Saddleback Memorial Foundation, the fundraising arm for the not-for-profit hospital in Laguna Hills.

 

BOUTIQUE TO RAISE FUNDS FOR BREAST CANCER

More than 20 vendors are participating in the Think Pink Boutique on Oct. 22. The 2-7 p.m. event, which is raising funds to support diagnostic care and treatment for breast cancer at Mission Hospital, is launched by Mission Hospital Valiant Women at the Mission Viejo Country Club. The vendors will donate 20 percent of their sales. Shopping includes jewelry, purses, candles, wine, yoga bags, plants, essential oils, skin care products and baby quilts. The event is part of the nonprofit’s monthlong Wall of Honor campaign to support breast cancer. The wall, which will be up on display until Oct. 31 at The Shops at Mission Viejo, is aiming to create awareness for the importance of mammograms and raise funds to support treatment for breast cancer. People can honor breast cancer patients and survivors by adding a tribute to the wall.

Source: http://www.ocregister.com/articles/cancer-687490-breast-event.html

###

Parsippany Fall Festival draws thousands | Parsippany Focus (Frank Cahill)

Beautiful weather attracts many Parsippany residents to annual event

PARSIPPANY — Thousands attended the 14th Annual Parsippany Fall Festival, on Sunday, September 20 along North Beverwyck Road. The event included numerous food and craft vendors, non-profit community groups, including the Kiwanis Club of Greater Parsippany, Rotary of Parsippany-Troy Hills, Woman’s Club of Parsippany, rides for the kiddies, entertainment and live music. The Parsippany High School Marching Band also performed.

The Township of Parsippany has allocated $60,000 in the annual budget to pay for overtime for DPW workers, Policemen and other employees needed to hold the event.

After eight years, Parsippany’s Fall Festival had to be eliminated in 2010 because of fiscal constraints but the Township Council approved the budget to bring the event back in 2013.

For more pictures, visit Parsippany Focus Flickr page, by clicking here.

To view our video of the event, click here

Source: http://parsippanyfocus.com/2015/09/21/parsippany-fall-festival-draws-thousands/

###

Redstock draws hundreds to annual event | Parsippany Focus (Frank Cahill)

PARSIPPANY — Parsippany High School held its annual Redstock on Saturday, June 13. The public participated in many sports activities and games at the school’s football field.

The event started at 12:00 Noon and ended at 4:00 p.m. and offered food, face painting, arts and crafts, bounce house, dunk tank, games and prizes and live entertainment. The PTSA will held a Tricky Tray and Raffle.

Many local business sponsored the event.  The sponsors included Anette Ricciardi, Arboone, Applebee’s, Ava’s Cupcakes, Baldwin Pizzeria, Bershire Hathaway Services, Blink Fitness, Boiling Springs Bank, Brian Deegan, Wells Fargo Advisors, C-Town Supermarket, C2 Education, Class Act Embroidery and Screen Printing, DJKB Productions, Gail Napolitano, RE/MAX, Greenspan Family Eyecare, Gripp Plumbing and Heating, Heroes Journey Crossfit, Houlihan’s, Imperial Bag and Paper, Jimmy John’s, Karlital Crafts and Dolls, Kristina Resciniti, Jewels by Park Lane, Last Licks Ice Cream, Math Wizard of Parsippany, Melanie and Fred Hafdelin, Weichert Realtors, Mayor James Barberio, Mount Holleran Towne Tavern, Parsippany Focus, Parsippany High School PTSA, Party Fair, Passaic County Community College, ProMotions Training Academy, Retro Fitness, Sarah Joen, Stella and Dot, SAT by MBA, Susan J. Kroeger, CPA, The Source of Health, The Wave Set and Kona Ice.

Following the event was the Central Middle School Flag Football game, Hawkeye Community Awards and the annual Juniors vs. Seniors PowderPuff Football game.

Parsippany Focus covered all three events, so look for the articles on those events too!.

Source: http://parsippanyfocus.com/2015/06/14/redstock-draws-hundreds-to-annual-event/

###

Redstock returns to Parsippany High School | Parsippany Focus (Frank Cahill)

Parsippany High School will hold its annual Redstock on Saturday, June 7, inviting the public to participate in many sports activities and games at the school’s football field. The highlight of the festival will be the  Powder Puff flag football game between the senior and junior girls.

The event starts at 12:00 Noon and ends at 4:00 p.m.  offers food, face painting, arts and crafts, bounce house, dunk tank, games and prizes and live entertainment. The PTSA will hold a Tricky Tray and Raffle.

Boiling Springs Bank, C2 Education, Class Act Embroidery, Re/Max, The Wave Set, Parsippany Area Chamber of Commerce, Dancers Pointe Studio, Parsippany Municipal Alliance Committee, Vitality Handmade Designs, Parsippany Police Department, Beach Snaps Rita’s Italian Ice, Project Graduation, Anthony & Sons and Holistic Health Center will have tables supplying information to the public.

Following the event is the Central Middle School Flag Football game  at 4:30 p.m., Hawkeye Community Awards at 5:30 p.m., and the annual Juniors vs. Seniors PowderPuff Football game at 6:00 p.m.

Click here to see file photos from 2011 Parsippany High School Redstock.

Source: http://parsippanyfocus.com/2014/06/05/restock-returns-to-parsippany-high-school/

 ###

The Wave Set | AlexanderPerlstein.com (Alexander Perlstein)

The best designs are done for a good cause. This design was a result of a collaboration with Cameron and Jared from The Wave Set. They approached me needing a design for the premiere showing party of their documentary, '65 PERCENT.' The result was a typographical representation of who they are. Please support my friends at The Wave Set and see how one idea can make a difference.

Hepatitis Testing Day is Tuesday, May 19th: More Than 150,000 People in New Jersey Are Living with Hepatitis C | DrugPolicy.Org

Advocates Frustrated with Slow Progress of Life-Saving Bill

Coalition Calls for Assembly to Pass Hepatitis C Testing Legislation

Trenton—To commemorate Hepatitis Testing Day, the Hepatitis C Action Campaign coalition and patient advocates are urging the General Assembly to approve and Governor Christie to sign Senate Bill 876 / Assembly Bill 2555, which would require hospitals and health care professionals to offer hepatitis C testing to people born between 1945 and 1965. Three quarters of individuals with hepatitis C are in this age group and the vast majority are unaware that they are infected with the virus. The legislation would also authorize certain laboratories to perform rapid hepatitis C testing. Senate Bill 876 was approved by the full Senate early this year and its companion, Assembly Bill 2555, is awaiting consideration by the Assembly Health and Senior Services Committee.

Hepatitis C is a contagious liver disease spread when blood from a person infected with the Hepatitis C virus enters the body of someone who is not infected to the blood of an infected person. If left untreated, hepatitis C can cause extensive liver damage, cirrhosis, liver cancer, and ultimately death. Because it has no symptoms people often go for decades without discovering they are infected, allowing the virus to progress untreated and with devastating consequences. Early diagnosis can improve health outcomes and facilitate access to curative treatments.

“This legislation is urgently needed,” said Roseanne Scotti, New Jersey State Director for the Drug Policy Alliance. “Hepatitis C is a silent killer that must be stopped. Because people often don’t show symptoms for many years, most people are unaware they are infected. Expanded testing is needed so people know their status and can act to get care and treatment.”

The Centers for Disease Control and Prevention (CDC) recommends that anyone born between 1945 and 1965 get tested for hepatitis C. African Americans and veterans also have substantially higher rates of hepatitis C infection. More people now die from hepatitis C than die from HIV/AIDS in the United States. Without concerted action, the CDC predicts that deaths from hepatitis C will double or even triple in the next 20 years. Widespread testing will enable those infected to receive life-saving treatment and prevent transmission to others.

“By incorporating Hep C testing into regular medical care we diminish the stigma of the disease, educate people about their status and prevent the transmission to others. Most importantly, we connect people to treatment before this terrible disease wreaks havoc on their body,” said Senator Joseph F. Vitale (D-Middlesex), Chairman Senate Health, Human Services and Senior Citizens Committee. “I am hopeful that my colleagues in the Assembly take this bill up before the Legislature goes on summer recess.”The month of May is designated as Hepatitis Awareness Month in the United States and

May 19th is Hepatitis Testing Day. During May, the CDC and groups like the American Liver Foundation work to raise awareness surrounding this silent killer and encourage those most at risk to get tested.

Lisa Gallipoli, Executive Director of the Greater New York Division of the American Liver Foundation, which serves North Jersey, said “When it comes to Hepatitis C it is simple – Treat – Test- Cure! It has never been more important to TEST – find out who has Hep C; TREAT – get those with Hep C on treatment; CURE – Hep C is CURABLE for over 90% of the individuals who receive treatment. This legislation would do just that!”

Dr. Andrew N. de la Torre MD, FACS, a liver transplant surgeon and Director of the Liver, Pancreas & Biliary Surgery at St. Joseph’s Regional Medical Center, said “I cannot think of a justifiable reason not to pass this bill. It would be a huge opportunity to save thousands of lives that are lost to liver failure and liver cancer. Even though the cost to treat hepatitis C seems expensive, it is far more expensive and painful to treat and watch patients die from liver failure or advanced liver cancer. Even after receiving a liver transplant, patients require treatment for Hep C; so why not treat them earlier and possibly avoid the need for and costs of a liver transplant?”

Senate Bill 876 is sponsored by Senator Joe Vitale (D-Middlesex), Senator Richard Codey (D-Essex and Morris) and Senator Fred Madden (D-Camden and Gloucester). The Assembly companion, A2555, is sponsored by Assemblyman Reed Gusciora (D-Hunterdon and Mercer).

The Hepatitis C Action Campaign and Senate Bill 876 / Assembly Bill 2555 are supported by a coalition of patients, physicians, and public health, nonprofit, and advocacy organizations, including the New Jersey office of the Drug Policy Alliance, the Hepatitis C Association, the Greater New York and Mid-Atlantic Divisions of the American Liver Foundation, the South Jersey AIDS Alliance, the North Jersey Community Research Initiative (NJCRI), Paterson Counseling Center, Camden AHEC, Hyacinth AIDS Foundation, Well of Hope Community Development Corporation, Inc., Comprehensive Liver Care of New Jersey, Iris House, Buddies of New Jersey, Inc., PROCEED, Inc., African American Office of Gay Concerns, Hepatitis Foundation International, Vietnam Veterans of America, The Wave Set, National Black Leadership Commission on AIDS, Our Lady of Lourdes Medical Center (Camden), Atlantic Gastroenterology Associates, and Trinitas Regional Medical Center – Early Intervention Program.

Source: https://drugpolicy.org/news/2015/05/hepatitis-testing-day-tuesday-may-19th-more-150000-people-new-jersey-are-living-hepatit

Pick-up: eNews Park Forest

 ###

One year After Transplant, Brothers Complete Documentary To Enlist Organ Donors | Mendham News (Cheryl Conway)

Cameron Wohl of Parsippany, a former student of County College of Morris in Randolph, got a second chance to live just one year ago when his older brother, Jared, donated a portion of his liver to him.

The brothers spent the past year documenting their family’s journey through the transplant experience and are almost ready to share their documentary to encourage and educate others about the indispensable need for more donors. They are hoping to get the documentary out for distribution to the public later this year.

Cameron, 25, and Jared, 28, raised money for the production of their documentary through the organization they established – The Wave Set – to create a movement and spread awareness and education on the importance of organ donation.  In Dec. 2013, they had started a campaign to raise money for their documentary. Through social media and a line of apparel to serve as visual awareness for their cause, the pair raised almost $35,000 during their one month campaign.

They are on a mission to share their story and encourage others to become donors.

“People should see this film because the necessity of needing a life-saving organ transplant can happen to anyone at anytime,” says Jared. “Too many people are suffering from the inability of receiving a life-saving transplant and we owe it to ourselves to change that.”

This time last year, the brothers were recovering from surgery at New York Presbyterian Hospital in Manhattan. Cameron’s journey actually began when he was 13 when he was diagnosed in 2003 with Primary Sclerosis (PSC), a rare autoimmune disease- primarily affecting his liver- with less than 200,000 cases worldwide. He went from being an “active and normal” seventh grader to “quite sick.” He would get a “viral flare up” but after it persisted, went to see a doctor, he describes. He had been diagnosed with ulcerative colitis a year prior which can result in PSC, he explains.

Cameron had a procedure done, ERCP, to remove the stones and sludge in his liver. Problem is the “PSC doesn’t have a cure,” says Cameron. “While I was stable I wasn’t cured by any means.” Cameron had to be on medicine for four years throughout high school and then at the age of 17, “they dropped the hammer” and told him “I was going to need a liver transplant. At some point, my liver would fail,” without a transplant.

“I was listed for transplant for a deceased liver,” Cameron explains. “There’s such a high demand for these organs. I knew I was nowhere near the top of the list. They use a formula; they give you a number” based on the Meld System, a scoring method implemented in 2002 to prioritize patients need for a transplant.

But that all changed by the time Cameron turned 21. “I declined and presented more issues, so they said ‘you may want to explore a living donor.’”

Jared jumped right on it, went through the “extensive process” to make sure he could be a viable option.

“He was approved,” says Cameron. “He was a perfect match to be a donor for me.” Three years apart to the day, the brothers share the same birthday…and the same liver.

Jared, a business teacher at Parsippany High School and computer teacher at Brooklawn Middle School in Parsippany, says he felt obligated to help his younger brother.

“I just felt like, a part of me, there was an obligation to my brother,” says Jared. “How do you pass up the opportunity to save someone’s life especially when it’s someone’s blood? Without hesitation I knew I’d do everything possible to save my brother’s life.”

Cameron’s younger sister, Brittany, was also a match for him as well as his dad. In order to be considered a match, both individuals need to have the same blood type. Candidates then go through a costly evaluation process that involves body scans, EKG’s and blood work.

With Jared close in age to his brother and the same body build, he would be the best match for Cameron.

Only obstacle was Cameron’s concern for his brother.

“When he was approved, I got cold feet,” says Cameron. “I don’t know if I could put my brother’s life in danger. At any time, I could go into liver failure.” Cameron figured “I had a safety net; if anything happened, he [Jared] was willing and able.”    So he conferred with his doctor who told him “if you’re not ready you can defer and wait.”

Cameron decided to delay the process to have the transplant and put his brother through the procedure, but that all changed 18 months later.

“I prolonged the transplant,” says Cameron, a business specialist for Apple. Although he missed a lot of his senior year from being “exhausted,” Cameron still graduated high school and then attended CCM where he earned his associate’s degree in Exercise Science in 2010.

“I was doing pretty well,” until his routine checkup in Aug. 2013, when doctors found a tumor on his liver.

After reviewing his medical options, Cameron decided to get chemotherapy treatment- Chemo-embolization- to target and kill the tumor- on Oct. 31, 2013, and then later go through with the liver transplant on Feb. 11, 2014 at New York Presbyterian Hospital in Manhattan.

Jared went into surgery first, a four hour procedure to remove the entire right lobe of his liver, or 65 percent, about the size of a fist. His incision is from the bottom of his sternum to the top of his belly button.

Doctors had to take Jared’s liver out first “to make sure it was good,” says Cameron, conducting “lots of microscopic surgery to make sure it functions.”

For Cameron, his entire liver and gall bladder was removed, and then Jared’s liver portion was transplanted in. Dr. Jean Edmond, who performed the first living donor liver transplant in North America in 1989, performed the operation.

“I was blessed to have them pick up my case,” says Cameron. Dr. Robert Brown, in charge of hepatology, was Cameron’s doctor up until transplant; Dr. Benjamin Samstein conducted Jared’s surgery.

Recovery was eight days in the hospital for both brothers, with two months recovery.

It was a matter of “rehabbing my entire body,” says Cameron. “I was on a lot of different medication. In the beginning, it’s really challenging, but when you look back, you get through it. From not having good blood work for so long to now, everything looks great. My numbers have been consistently normal.”

Jared agrees, “It was pretty intense,” the recovery, with “a lot of physical pain and a lot of mental anguish. It would take six to eight weeks to regenerate 85 percent of the original shape of his liver, and six to eight months to get his full liver back.

“I feel great,” says Jared, a year later. “It just takes time. You are just resting. Although it’s painful, I would do it again. It’s a surreal feeling to look back at it all; I look at my scar.” As a singer/songwriter, Jared’s says the entire experience gave him a “lot more substance to write about”…and a documentary to produce.

It was in the summer of 2013 when the brothers brought their creative minds together and came up with their idea for the Wave Set. With Jared, as a singer/songwriter and Cameron who loves to draw and paint, they decided to host a crowd funding campaign to raise funds for their documentary titled “65 Percent.”

Jared liked the word Wave, with its symbolism as a wave being one of the “strongest forces on earth. One of us can only do so much but when you join forces you can do more,” Jared explains. WAVE also stands for We Are Vital To Each Other, thus their motto.

In their logo, the A has a triangle, with the top triangle representing a deceased donor and the other 8 triangles representing how a person has eight organs to save eight lives. Those organs include the heart, liver, two lungs, pancreas, two kidneys and intestines.

“One person can save eight lives,” says Cameron.

To raise the funds, they launched a crowd funding campaign through indiegogo with incentives to people who pledge. Those who contributed got to choose from a line of the Wave Set Apparel, from stickers, to beanies, t-shirts and sweatshirts. Their goal was to raise $30,000, enough money to film their documentary from start to finish showcasing “what it’s like for a family who needs a transplant.”

Cameron says they reached six different countries through their 30-day social media campaign from Dec. 13 to Jan. 13, and raised $34,000. Cameron’s girlfriend, Stephanie Whittaker, helped design the clothing brand.

With the campaign a success, the brothers hired a professional production crew- also two brothers- Mike and Jon Altino from Silver Style Pictures in Red Bank, to film their experience from Jan. 13, 2013, through the transplant on Feb. 11, 2014, up until Oct. 2014. The full length documentary- “65 Percent” -which stands for the percentage of Jared’s liver taken out and given to his brother Cameron- captures real life experience and footage with dialogue featuring doctors, the surgeries and recovery.

“The Wave Set brings the reality to it,” says Cameron. “It’s not to show the procedures” but let others see “what the experience was like for an entire family; to see what unity and love play in this experience. We want to spread a culture of love, unity and selflessness. It’s a real life depiction of what family is all about.”

While the creative film is finished, with post production, editing, sound and finalizing recently complete, the brothers are hoping to enter their documentary into a film festival and then will seek distribution.

“Our goal is to have as many people see it as possible to raise awareness to everyone to register of being a registered donor,” says Cameron, “to give that life to someone else.”

They hope to have their documentary ready for the end of 2015. In the meantime, they have already spoken to some small rotary groups, but plan to reach larger groups by speaking at live educational events, integrating their music and art, to youthful audiences, colleges, high schools and corporate events nation-wide.

“We hope to devote more to the cause and spread our mission,” says Cameron.

Go to waveset.com, join us tab, and register as an organ donor.

The United Network for Organ Sharing, unos.org, has a waiting list of candidates awaiting transplants and a list of donors.

“A lot of people say they support it [organ donation] but they are not registered,” says Cameron. According to the web, “150 million Americans support organ donation but are not registered.”

About 18 Americans die each and every day while awaiting an organ transplant, according to the Wave Set website. To make matters worse, a new person is added to the waiting list every 10 minutes (organdonor.gov).

 Source: https://zdocs.tips/doc/2216521424112314mendham-feb-2015-pdf-d1m42ezde510

Pick-up: The Randolph News; Mount Olive News (p. 18)

###

Ten shining scenes from 2014 in Morris County | Daily Record (Peggy Wright)

Morris County was the scene in 2014 of many uplifting events: Donors dug deeply into their pockets to bestow generous gifts on Morristown Medical Center. Veterans were recognized for their sacrifices. Individuals and teams triumphed with their athleticism. High school marching bands became part of the history of Super Bowl XLVIII. A brother resolved to help his sibling keep on living.

Below are ten news highlights from the past year that evoke some of the brightest, compassionate and proudest moments in the county.

MORRISTOWN COUPLE DONATES $5 MILLION TO HOSPITAL

Businessman and philanthropist Robert "Dick" Deskovick and his wife, Louise "Jackie," in November announced a $5 million donation to complete the renovation of the Maternity Center at Morristown Medical Center. The gift exceeded the $2.7 million fundraising goal for the renovation that has been under way for a few years.

Raised in East Hanover, Deskovick was a builder and, in the 1960s co-founded the First Morris Bank, now Provident Bank. He is a trustee of both the Dick and Jackie Deskovick Foundation and The Morristown Green. The renovation of the Maternity Center is part of a larger $12 million multiphase project to update the 76,500-square-foot space into a state-of-the-art haven for new mothers, infants and their families.

PARSIPPANY HILLS AND MOUNTAIN LAKES HIGH SCHOOL FOOTBALL TEAMS CAPTURE STATE CHAMPIONSHIPS

Parsippany Hills High School's Vikings football team won the NJSIAA North 2, Group III championship on Dec. 7, beating Cranford High 20-13 in a title game at MetLife Stadium. The players were later feted with a motorcade through town, a high school rally and received certificates of outstanding achievement from the mayor and council.

The same day, the Mountain Lakes High School Herd footballers rolled to a 36-28 victory over Lincoln High, bringing home the NJSIAA Section 2, Group II championship.

"We have some dynamic runners," Herd Coach Darrell Fusco said, referring mainly to Bobby Frawley (18 for 106 rushing, 1 TD), quarterback Brad Smith (14 for 94, 3 TDs), Brad Landry (17 for 70), and Jack Palazzi (6 for 34). "But our line was just outstanding. We were able to get chunks of yards. The kids believed in each other all year, and today (Dec. 7) was another example of that."

The Vikings pounded their rivals, with Angelo Gallego (38 for 189, 1 TD) and J.D. Keyes (8 for 40) blasting away behind center Chris Pietrowicz (6-2, 235), guards Luke Haltigan (5-11, 255) and Zach Fife (6-0, 250), and tackles Kyle McGinley (6-2, 280) and Chris Wojtukiewicz (6-2, 275).

MORRIS PLAINS MAN SHARES HIS LIVER TO SAVE HIS BROTHER'S LIFE

In February, Parsippany High School teacher Jared Wohl became a living liver donor for his younger brother, Cameron Wohl.

The operation, performed by two medical teams at New York-Presbyterian Hospital/Columbia University Medical Center, saved the life of Cameron, now 25. Still, it took Cameron nearly two years to accept Jared's gift -- 65 percent of his healthy liver.

"A healthy liver grows back to three-quarters of its normal size in three months. It grows very fast," said Dr. Jean Emond, Cameron's surgeon and vice chair and chief of transplantation at New York-Presbyterian Hospital/Columbia University Medical Center. "Functioning is normal in about three months. It will grow back to normal size in a year.

The brothers are promoting The WAVE SET, an organization they founded to educate people about organ donation and encourage them to donate.

"FIBER FAIRIES" LEAVE KNITTED HATS AND SCARVES ON MORRISTOWN GREEN STATUES FOR THE COLD AND NEEDY

When bone-shaking cold set in, in January, colorful scarves and hats started appearing on statues on the Morristown Green with notes attached that read: "If you need this to help keep you warm in this cold weather, then it is now yours. Life is good, pass it on. — The Morristown Fiber Fairy."

Preferring to stay anonymous, one of the Fiber Fairies said: "It is not about us, it's about the message. Each day we all have the chance to make someone's day brighter. Yet, how many of us take that challenge to heart and truly consider the difference we could make in the life of another person? So often, we think that making a difference involves spending a lot of money, helping many people or investing a lot of time. It doesn't have to."

CHAMBERS CENTER FOR WELL BEING OPENS AT MORRISTOWN MEDICAL CENTER

A $6 million, 20,000-square-foot center to serve as a hub for healers to practice integrative medicine opened in October. Atlantic Health System's Chambers Center for Well Being, named for benefactor Ray Chambers, founding chairman of the Points of Light Institute and private equity investor, had an opening that was celebrated with the appearances of Dean Ornish and Deepak Chopra, leaders in the field of integrative medicine that is devoted to treating a person's mind, body and spirit simultaneously.

Center Director Emilie Rowan said the center features 11 practitioner rooms for doctors; 15 treatment rooms; five doctors and a nurse practitioner to provide integrative medical care; and 40 practitioners in massage, acupuncture, craniosacral work, nutrition, lifestyle coaching and more.

The center also boasts Luvo Caf, which serves only healthy, natural or organic meals with gluten-free options; a Well Being Marketplace; a kitchen where cooking and nutrition will be taught; a fitness facility and multiple meeting rooms in which classes will be offered in emotional freedom techniques, Nia, Pilates, Qi Gong, Zumba, Jin Shin Jyutsu, and singing bowls.

HIGHLANDS HEALTH VAN, OFF-SHOOT OF ZUFALL HEALTH CENTER, TENDS TO DENTAL NEEDS OF MILITARY VETERANS

The Highlands Health Van, an eco-friendly mobile medical unit retrofitted to accommodate dental appointments, was started in the spring to benefit military veterans who may lack necessary funds to tend to oral health and hygiene.

The dental-van initiative, which county officials believe is unique in the nation, is the result of a partnership between Zufall and the Morris County Department of Human Services. Zufall employs 200 staffers, including 14 dentists, some of them gum and pediatric specialists. Its brick-and-mortar health and dental centers are in Dover, Morristown, Hackettstown, Somerville, and Flemington.

MOUNT OLIVE HIGH SCHOOL GRADUATE LEAPT TO SUCCESS

Keturah Orji's senior year was exemplary: she never lost the long or triple jump competition. Orji was the All Daily Record Girls Outdoor Track and Field Athlete of the Year for the third year in a row. She was the New Balance Nationals, Penn Relays, Meet of Champions, Group III, North 1 Group III, Morris County and NJAC-Large Schools champion in both the long jump and triple jump.

She holds the state record in the triple jump, and the county records in both – and is also part of the county record long and triple jump relays.

A gymnast since the third grade, she switched to the track team as a Mount Olive freshman. She was always faster than the boys while playing tag in elementary school, and that translated well to sprinting.

ROXBURY AND MORRIS KNOLLS MARCHING BANDS PERFORM AT SUPER BOW XLVIII

Members of the Roxbury High School Marching Band and Morris Knolls High School Marching Band had the thrilling experience of performing in the Super Bowl XLVIII Halftime extravaganza at MetLife Stadium in February.

Before 80,000 screaming fans at the stadium, they performed with Bruno Mars and the Red Hot Chili Peppers on one of the biggest prime-time stages in the world.

"It was absolutely unbelievable," said Sara Cummings, drum major for the Morris Knolls High School Marching Band. "Being on the field to rehearse with Bruno Mars was one thing. It was totally another to do it with all those lights all around, and the roar of the crowd. It was just amazing."

Marching band members from Morris Knolls, Roxbury, South Brunswick, Nutley and Bergenfield high schools recruited for the onfield band were reassigned to perform marching drills, dressed in all-black "ninja-style" outfits and carrying flexible, rectangular panels with 12 LED lights on them. The lights were synched to the halftime show and wool caps with similar lights, given to all ticket holders to wear during halftime with the goal of creating what organizers believed would be "the world's largest LED screen."

RANDOLPH MAN NAMED "BIG BROTHER OF THE YEAR" BY BIG BROTHERS BIG SISTERS OF AMERICA

Big Brothers Big Sisters of America named Tom Fascia of Randolph its Big Brother of the Year, an impressive honor since the mentoring network supports 200,000 matches between adult volunteers and youths nationally.

Fascia, a 33-year-old director at an executive search firm, is a "Big." Amir Howard of Morristown, now 14, is his "Little." They've been matched for eight years. Fascia has two children of his own and said he strives for "a good, nurturing relationship" with Amir.

The pair has enjoyed lots of adventures together, from Nets games and family cookouts to Wildwood vacations and trips to Carlo's Bake Shop or the Morristown and Morris Township Library. Because of the award, they had a new one — a June trip to Chicago to accept Fascia's award at the nonprofit's 2014 National Leadership Summit.

WAR HERO RECEIVES SERVICE DOG DURING "LEASH CEREMONY" AT PICATINNY ARSENAL

The Marines Care Foundation in July presented Spartan, a service dog, to Army Maj. Will Lyles of Texas during a leash ceremony at Picatinny Arsenal in Rockaway Township.

The foundation is the charitable arm of the Whippany-based Lance Cpl. Robert J. Slattery Detachment of the Marine Corps League. It paid $15,000 for the organization K9 Soldiers in Frenchtown to train the German shepherd.

Lyles, now 33, served two tours in Iraq. On Aug. 28, 2010, during his third and final deployment in Oruzgan Province in Afghanistan, he stepped on a pressure-plate improvised explosive device (IED) during a firefight. He was serving with Alpha Company, 2nd Battalion, 7th Special Forces Group.

"They were outnumbered. They were pinned down, and he went to get the radio to call in for fire support," said William Freeman, former commandant of the Slattery detachment and co-chair of the leash ceremony and event. "There was an IED and it was set off. Maj. Lyles has three Bronze Stars for valor and two Purple Hearts. He's the real thing."

The blast resulted in the loss of both of Lyles' legs above the knee and left him with shrapnel wounds, burns, and other injuries. When he arrived at Brooke Army Medical Center in San Antonio, he was on a ventilator and spent six weeks in intensive care battling infection and sepsis and losing six more inches of his upper legs.

Source: http://www.dailyrecord.com/story/news/local/morris-county/2014/12/28/ten-shining-scenes-morris-county/20963355/

###

Meet WAVE Set in Parsippany | NorthJersey.com

The Morris County Multi Organ Transplant Group will host the Wohl Brothers who will discuss their journey through liver transplantation and their WAVE (We Are Vital to Each other) Set foundation, dedicated to organ donation awareness, on Wednesday, Nov. 5, at 7 p.m. in the Community Room of the Parsippany Police Station, 3339 Route 46 East.

The Morris County Multi Organ Transplant Group comprises local men and women who have had organ or tissue transplants, those on the wait lists, their family and donors.

Members are from surrounding communities including: Parsippany, Denville, Boonton, Morristown and Chatham.

The group regularly meets the first Wednesday of the month at 7 p.m. in the Community Room of the Parsippany Police Dept.

For more information, call Nick at 973-984-6966 or send an email to mcorgangroup@gmail.com.

 Source: http://www.northjersey.com/community-news/clubs-and-service-organizations/meet-wave-set-in-parsippany-1.1120541

###

Jared Wohl – You Are [TMN PREMIERE] | The Music Ninja (Clayton Warwick)

We have the unique pleasure of hearing hundreds of stories a week. Hundreds of emails a day come across our screen, all of which are sharing a small piece of their life with us. Whether it be whimsical and light-hearted, dark and gloomy, or incredibly uplifting, we get a chance to hear more than just music. We get a chance to hear about people’s lives through their art. Today marks one of the more remarkable stories we’ve come across, as we take a deeper look into Jared Wohl.

Having previously worked with Wohl on his initial project, Farewell Luna, we had never known any of his backstory, until now. Eight months ago, this New Jersey native laid in the transplant unit at New York Presbyterian Hospital recovering from a traumatic surgery leaving him with only 35% of his liver. Just two years earlier, he had sat in the same hospital, undergoing extensive testing, which would reveal whether or not he could save his brother’s life. Cameron, Jared’s brother, has been living with a chronic, potentially fatal disease (Primary Sclerosing Cholangitis) for over a decade. The brothers soon realized that in addition to sharing the same birthday three years to the day, they would soon share something much more significant. On February 11th 2014, Jared successfully donated 65% of his liver to Cameron.

Going through a life experience like Jared did is sure to incite powerful life changes, which is why he has decided to reintroduce himself as a singer-songwriter, only this time, as himself. While he had a strong following under his previous moniker, the gravity of becoming a living organ donor, and inevitably saving his younger brother’s life, gave songwriting an entirely new meaning.

The title track for his new EP, which can be found on their upcoming documentary (trailer below), is premiering today here on The Music Ninja. Wohl once again reminds us of why we were drawn to him in the first place, effortlessly displaying his stunning vocal tone and range. Set to the backdrop of energetic percussion, some light and glowing guitar work, and a steady bassline “You Are” instantly hooks the listener in, commanding attention for the full five minute tune. While the focus on vocals is heavy in the beginning, the instrumentals ultimately catch up, leading way to a soulful outtro that leaves a lasting impression.

After you’ve listened through, take a moment to watch the trailer for the Wohl brother’s documentary below, which will ultimately shed light on their newly formed foundation, The Wave Set.

 Source: http://www.themusicninja.com/jared-wohl-you-are-tmn-premiere/

###