Banding together to eradicate ‘riverblindness’

Young musician dedicates recital, and donates funds, to UFAR

By: Dennis O’Neill
   When Lawrenceville resident Dr. Daniel Shungu gave Stephanie Chapin the opportunity to change a million lives in his native Democratic Republic of Congo (DRC), the 19-year-old graduate of Hopewell Valley Central High School decided to do one of the things she does best — she played the piano.
   Ms. Chapin dedicated her senior year recital to raising funds for the United Front Against Riverblindness (UFAR), a nonprofit organization founded by Dr. Shungu to eradicate onchocerciasis (commonly known as riverblindness) in the DRC. Riverblindness is preventable by taking annual doses of ivermectin (known by its trade name, Mectizan).
   The debilitating disease is transmitted by the bites of small black flies that breed along the banks of fast-flowing rivers. In the remote villages of the Southern Maniema Province of the DRC, where up to 90 percent of the adults have been blinded, children often become their primary caregivers. They become their parents’ eyes (leaving no time for school, or play, as they lead adults around the village by the hand) while they wait for the disease to take their own sight.
   "I had never heard about it before. But, seeing the effects of this disease — especially on the children — is devastating," Ms. Chapin said. "And Dr. Shungu was so interested in our help."
   Ms. Chapin’s piano teacher, Deborah Tonner of Meadow Lane Music in Pennington, said Ms. Chapin’s involvement with UFAR began with the movie "Hotel Rwanda."
   "She was so moved by the film that she refused to practice her lesson until I helped her find a way to respond to the needs in Rwanda," Ms. Tonner said.
   Coincidentally, while booking space in the church hall for her student’s piano recital, Ms. Tonner had picked up a newsletter at Nassau Presbyterian Church with information about UFAR and Dr. Shungu’s work in the Congo.
   "After meeting with Dr. Shungu and seeing the devastating effects of the disease on the Congolese people, Stephanie decided to turn her recital into a fundraiser for Dr. Shungu’s work," Ms. Tonner said.
   Ms. Chapin’s recital became the first annual Princeton Area Youth Against Riverblindness Concert in June 2005, and included five other student musicians. Last June, the second annual concert blossomed to 25 area youth and professional musicians associated with Meadow Lane Music.
   Dr. Shungu is a former Merck & Co. employee experienced in clinical microbiology and infectious diseases. Currently on site at Kasongo in the Southern Maniema Province of the DRC, he e-mailed that the two annual youth-sponsored concerts have raised more than $6,000 that have been matched "dollar-for-dollar" by a Merck matching grant. Corporate matching fund donations were also made by Lockheed Martin Systems Management and Johnson & Johnson.
   "This wonderful expression of love and caring by these youths has helped UFAR secure the maximum $20,000 of matching funds from Merck (renewable annually for the next five years) to help us meet our first-year financial obligations for the project," Dr. Shungu said. "Their continuing support will be needed to help achieve our ultimate goal of controlling and eliminating riverblindness in the Kasongo region within the next 15 years."
   Seventeen-year-old Carl West of Pennington played the double bass in a Count Basie duet with Ms. Chapin at the first UFAR fundraiser. Soon after, he went to hear Dr. Shungu speak at a Princeton Rotary Club luncheon where longtime Rotarians related the history of school children uniting to raise funds to help eliminate polio. The story inspired Mr. West to help found STAR — "Standing Together Against Riverblindness" — a local grassroots organization created and run by Princeton-area youth.
   "When we went with Dr. Shungu to the Rotary Club, we could see that he was this very nice retired guy who was making big personal sacrifices in order to help these people," Mr. West explained. "He didn’t have an elaborate fundraising network, so we decided to take on as much of the fundraising tasks as we could cover."
   What also attracted Mr. West and Ms. Chapin to Dr. Shungu’s cause is that the elimination of riverblindness in the DRC is no pipe dream, but a very realistic goal. Unlike other devastating diseases that often require millions of dollars and years of research to find a treatment or cure, riverblindness already has an effective treatment.
   In 1987, Merck & Co. began providing Mectizan — a drug that kills the infectious microscopic larvae (microfilaria) that causes riverblindness — free of charge. An annual dose of the drug, taken for 10 to 15 years (the lifespan of the parasitic adult worms that produce the microfilaria), prevents the severe itching, disfiguring nodules, and eventual blindness caused by the disease.
   Roger Youmans, M.D., of Princeton is UFAR’s associate executive director and vice-chairman of its board. His new book, "When Bull Elephants Fight" (Word Association Publishers) was released Friday and recounts his 14 years as a medical missionary to the DRC and Ghana. He said that UFAR’s primary expense is getting the medicine to remote villages that have no roads or boats, and training local medical support personnel to administer the program reliably.
   "There are so many diseases that people can give money to, but riverblindness is somewhat unique in that it can be eliminated," Dr. Youmans explained. "It’s already been eliminated in large parts of Africa, and in 15 years — with what these kids are doing in terms of raising money and awareness in the community — maybe it will be eliminated in all of Africa."
   The STAR student leadership’s strategy to create a growing network of support begins next week, on Oct. 23. Local high school students, like 16-year-old junior Tiffany Olszuk of Hopewell Valley Central High School, will be trying to build student awareness of the disease in their schools and to recruit student volunteers for the organization’s T-shirt fundraiser, which will begin in January. Proceeds from the sale will be presented to Dr. Shungu at the Third Annual Riverblindness Concert scheduled for June 24.
   Ms. Olszuk said she is targeting her school’s bulletin boards, setting up a STAR Web page linked to the school’s Web page, and also working through her school’s mock World Health Organization in order to help raise student awareness about UFAR.
   "I was really moved when I heard Dr. Shungu talk about wanting to give back to his country for all the blessings he had received in his life. I feel as if I have so much and have to do something to give back as well," Ms. Olszuk said. "This is something that we can do locally that can have an impact globally."
   Elsie McKee is professor of church history and historical theology at Princeton Theological Seminary. She was raised as a missionary’s child in the same region of the Congo where Dr. Shungu grew up. Although she had never met Dr. Shungu until a few years ago, it was her uncle (who taught math, physics, and music in the Congo) who was instrumental in securing the scholarship that first brought Dr. Shungu to the United States.
   Professor McKee said the energy and idealism of the young people involved with UFAR were a great asset to the organization and a key component to the projects success.
   "The African people are very resilient, but you can only keep trying for so long before your resilience begins to wear out," she said. "These remarkable young people are helping to bring them a marvelous hope that riverblindness will be eradicated from their communities so they can build a better future."
   Jennifer Jenkins is in her final year of study at Princeton Theological Seminary and a student of Professor McKee. Before coming to seminary, she spent time in Africa working in an orphanage in the Republic of Malawi. Intrigued by Professor McKee’s experiences in the Congo, she helped form a small discussion and prayer group focused on DRC issues.
   After meeting Dr. Shungu and hearing his presentation, the group began brainstorming ways to build awareness and raise financial support for UFAR among seminarians and the churches they serve as pastoral interns — including sponsoring an "Alternative Gift Fair" for the holidays and selling $10 shares in UFAR’s goals.
   "Eliminating riverblindness can really happen, but it needs funding. Supporting UFAR is a good way for people to see that they can make a difference in another part of the world," Ms. Jenkins said. "It’s amazing how just a few people can mobilize so many others and make a significant impact."
   Dr. Shungu said that it is still too early to determine the full impact that contributions from the Princeton area youth has made on the people of the remote villages of the Kasongo region.
   "My greatest hope is to finally realize that through UFAR’s efforts — in partnership with other organizations — the lives of thousands of men, women, and especially children in the Kasongo region of the DRC will be permanently protected from the debilitating outcomes and devastating socioeconomic consequences of riverblindness," he said.
   Stephanie Chapin, now a sophomore at Brandeis University, plans on remaining involved with UFAR until the group achieves its goal.
   "Helping to eliminate the disease for over a million people …," she said. "That would be really cool to see."
For more information about the United Front Against Riverblindness (UFAR), or to make a contribution, visit www.riverblindness.org. Tax-deductible donations can also be sent to: United Front Against Riverblindness, 13 Carnation Place, Lawrenceville 08648.