An Interview With John Rivera, Founder, Cristian Rivera Foundation

By Heather Fletcher

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.