An Interview With John 'Gungie' Rivera, Founder, Cristian Rivera Foundation

John “Gungie” Rivera is putting a face on Diffuse Intrinsic Pontine Glioma (DIPG). It's the smiling face of his 6-year-old son, Cristian, who died of the rare disease on Jan. 25, 2009.

Forming the Cristian Rivera Foundation shortly after his son's death of the malignant brainstem tumor, Rivera and a team of volunteers donate 100 percent of donated funds to raise awareness about the disease and to find a cure.

Based in New York, Rivera says the foundation has no staff and all its income is contributed. Every penny of the “few thousand dollars” the charity raises each year goes to help fund the research of one of his son's physicians: Dr. Mark Souweidane of Weill Cornell Medical Center.

FundRaising Success: What is Cristian Rivera Foundation’s mission?
John Rivera: The Cristian Rivera Foundation’s mission is to increase public awareness and understanding of Diffuse Intrinsic Pontine Glioma (DIPG), as well as raise funds that will support medical facilities and scientific trials whose primary focus is to find a cure for the disease. Pontine Glioma is an inoperable brain tumor located at the stem of the brain. The disease generally affects children between the ages [of 1 and 9], with the average life span of a child after diagnosis falling between three and 18 months. Only 300 cases are discovered in the United States each year, and there is currently no cure, though radiation and chemotherapy are administered to offer short-term treatment.

FS: Please tell us a little about the organization's history.
JR: The Cristian Rivera Foundation was created when 6-year-old Cristian Rivera, [my] son ... passed away after a two-year battle with Pontine Glioma on Jan. 25, 2009. Along with its many ... committee members, the foundation strives to raise both awareness and funds through fundraiser events, monthly newsletters, media outreach and awareness initiatives such as a month-long billboard campaign on Manhattan’s West Side Highway, which brought the foundation’s message to all who traversed the highly trafficked urban thoroughfare. These methods are designed to educate and enlighten those in the community who are not aware of DIPG and its devastating effect on children and families.

The Cristian Rivera Foundation donates all monies raised to hospitals and foundations actively researching cures for Pontine Glioma through medical trials and scientific research. The foundation has already contributed $40,000 to the research of Dr. Mark Souweidane of Memorial Sloan-Kettering and Weill Cornell Medical Center. Dr. Souweidane has dedicated his career to the surgical treatment of children with brain and spinal disorders. His novel treatment delivery approach is entering the clinical trial stage and thus far has yielded promising results. The Cristian Rivera Foundation is dedicated to supporting promising, innovative research like this in pursuit of a cure.

FS: How do you fund your mission?
JR: The foundation sells T-shirts and wristbands on its website and also encourages people to get involved in a wristband project where they sell wristbands on behalf of the foundation and send in a check for the monies raised.

Joan Hornig Jewelry chose the Cristian Rivera Foundation as its annual cause. The company designed a signature pendant influenced by the foundation and its mission. It is sold both on their website and through the foundation, with all proceeds going to the foundation.

The Cristian Rivera Foundation hosts various fundraising events throughout the year, as well as an annual gala, for which guests purchase tickets. At the Second Annual Gala, guests also got the chance to bid on valuable items and experiences in live and silent auction. These were donated by committee members and other generous individuals, so all monies raised were able to go straight to the foundation.

FS: What are the biggest challenges your organization faces as far as fundraising is concerned? How do you overcome them?
JR: The biggest barrier to getting donations is the fact that Pontine Glioma is a rare and little-known disease. Since only 300 children are diagnosed with Pontine Glioma every year, it’s a very close-knit community of affected families, and unless a friend, family member or acquaintance is afflicted with the disease, the likelihood is that a person will have never heard of it. The Cristian Rivera Foundation combats this with a multitiered awareness campaign. A billboard on Manhattan’s West Side Highway was aimed at alerting people to the disease and the foundation. The foundation also distributes literature to teach about the disease, including newsletters, business cards and a ... press kit. Donation recipient Dr. Mark Souweidane was present at the foundation’s recent fundraiser gala to talk to guests about the disease and explain to them exactly what it does to an afflicted child and [his] family.

FS: Do you foresee any big changes in the way you reach potential donors and other supporters in the near future?
JR: The foundation has thus far mounted a grassroots fundraising effort, holding various fundraiser events, selling merchandise and soliciting donations on its website. The foundation is currently exploring options for soliciting corporate donations and grants.

FS: How do you reach out to supporters and potential supporters in ways other than purely fundraising? Are you engaged with social media and social networking?
JR: The Cristian Rivera Foundation sends out a monthly newsletter to subscribers, keeping [them] up to date on the latest news and asking them to pass the information along to friends, family and colleagues. Messages are also sent via Facebook, text and voice ... to alert people of upcoming events, etc. The foundation also recently launched official Facebook and Twitter pages.

FS: Can you describe a recent successful fundraising effort?
JR: The Second Annual Cristian Rivera Foundation Gala was held at New York City event space Quo on Tuesday, Oct. 19. The venue was filled with supporters who enjoyed food donated by celebrity chefs and committee members Ricardo Cardona and Alex Garcia. They also had the chance to bid on one-of-a-kind items and experiences in both live and silent auctions. Lucky winners walked away with an autographed jersey from Carlos Beltran; a painting by Ouattara Watts; baseballs signed by Derek Jeter, Bob Gibson and Hank Aaron; a Cristian Rivera Foundation T-shirt autographed by "iCarly" star Miranda Cosgrove; a soccer ball signed by David Beckham; a football autographed by all of the New York Giants; boxing gloves autographed by legendary boxer Muhammad Ali; a date with “Las Gemelas Lulu y Lala” from "The Luis Jimenez Show" on X96.3; a weekend at the W Hotel in Hoboken, [N.J.] including dinner and lounge for both nights; and a party for 25 people catered by Alex Garcia and Ricardo Cardona, who cooked, cleaned and provided both liquor and staff.

Guests watched [me] present Dr. Mark Souweidane with a $30,000 check to help fund promising and innovative clinical trials. Following the conclusion of the auctions, an additional $10,000 was also donated.

FS: Have there been any major difficulties or setbacks you've faced along the way? Is there anything you would've done differently with your fundraising?
JR: The live and silent auctions held at this year’s gala were not as lucrative as they could have been. The starting bids should have been higher and there should have been an experienced auctioneer overseeing the process. In the future, the foundation plans to be more organized and knowledgeable about how such fundraising activities run and may even investigate holding auctions on a bigger scale, such as via eBay. The foundation also regrets not doing a reverse auction at the gala where people are asked to bid not on gifts or services but on donations to the foundation. This tool will be utilized in the future.

FS: What advice would you give to organizations similar to yours, in size and annual operating budget?
JR: Planning is important. Give yourself ample time to get your message out there and work through your list of contacts and close associates. Being organized leaves less room for error and gives you more opportunity to reach the people necessary to hit your fundraising goals.