National Volunteer Appreciation Week takes on a completely new meaning this year, our 40th anniversary of the Foundation. The National Neurofibromatosis Foundation, or NNFF, as Children’s Tumor Foundation was originally known, was born out of a patient venting her frustration to her clinician in 1978. Lynne Courtemanche, an RN, was the patient and Dr. Allan Rubenstein, the clinician. “There ought to be a place for people like me,” said Lynne and Dr. Rubenstein’s simple reply was, “So why don’t you start one?” And so she did.
In 1978, there was no basic research of any kind related to NF; not a single research grant had been awarded, nor had a conference related to NF been held. Dr. Rubenstein saw the need and marveled at the fact that millions of dollars were being awarded to study much less common disorders. The greatest obstacle seemed to be the complexity of NF and that no one specialty could claim the disorder. It appeared that the only way to focus the attention of the medical community on the significance of NF would be to start a group, and that is what Lynne and Dr. Rubenstein set out to do. This volunteer-driven effort of determination, passion and need leads us on a journey of 40 years of research and focused attention, resulting in accomplishments and milestones that our 1978 and prior counterparts didn’t dare to dream.
Ms. Courtemanche (Shapiro) began reaching others by holding bi-weekly meetings in her kitchen to answer dozens of letters from an eager community of patients and parents with hand-written notes. Initially, the best way to branch out of the New York City kitchen was to get volunteer help in starting Chapters of the Foundation all over the country. The very first Chapter to be formed was the Metropolitan Washington D.C. Chapter, started by Mary Ann Wilson, an NF parent, with help from Roswell Eldridge, M.D. (National Institutes of Health) and Kenneth Rosenbaum, M.D. (Children’s National Medical Center). “Five families met at a Chinese restaurant in downtown Washington (DC) in March 1979 and our Chapter was born,” according to Mary Ann Wilson in an issue of the Foundation’s newsletter commemorating the NNFF’s 10th anniversary.
The next Chapter to organize was Massachusetts, led by Chapter President Leslie Kates who was followed by volunteers in Arizona, California, Northeastern and Western New York, North Carolina, Michigan, South Eastern Pennsylvania, and Illinois by the end 1981. Most Chapters stayed strong without lapses in leadership, but some did not because of the unpredictable nature of NF and the great majority of the leaders being patients or family members.
As the outreach grew, it soon became evident that additional leadership was needed. Ms. Courtemanche (Shapiro) was getting married and moving out of state and Joan Rudd (now Engel), was voted in to take over the Presidency in 1981. Joan’s son, then 12-year-old Ken Rudd, had NF1. “Accepting the presidency of the NNFF stems from my personal need to extend a measure of control to a family situation for which I feel sorely inadequate,” wrote Joan Rudd in her first letter from the President in the newsletter in 1981.
Joan was connected to Ms. Courtemanche by another NF patient, Massachusetts General Hospital staff member, Porter Colley (b.1926-d. 2014) during a medical appointment for her son. You may have seen Ms. Colley’s incredible story featured in a Ripley’s Believe it or Not episode aired in 2002. Joan’s son, Ken Rudd, has followed the volunteer path that his mother paved for him and now serves as a member of the Board of Directors.
Between 1981 and 1984, under the Presidency of Joan Engel (Rudd), the Foundation branched out in many directions. A National Board (also made up of volunteers) was established, May NF Awareness Month was initiated, the first NF Walk (Walk-a-thon) took place in Pennsylvania, the first NF Symposium was held and Rita Kasky was named the first Executive Director of the Foundation. Additionally, in 1983, the Orphan Drug Act became law, which would enable people with NF to quickly and easily obtain any treatments that would be found, and legislature was introduced to establish the NF Commission. By the end of her tenure, there were 18 Chapters functioning throughout the country and momentum was building.
Over the next 35 years, we grew and more and more people at many different levels began to recognize neurofibromatosis. Major milestones began to unfold, many of which were either spearheaded or facilitated by Foundation volunteers. Our NF Clinics Network began forming as early as 1984 with the Organizational Conference in Toronto, Canada, attended by Chapter Presidents. The NF Conference was born through volunteer outreach to clinicians and researchers, May Awareness Proclamations expanded, and national fundraising programs were established, The NF Research Program of the Department of Defense was developed, corporate grants were made, the NF genes were discovered (NF1 in1990 and NF2 in 1993) through funding from the Foundation, which largely came as a result of the work of volunteers!
Flash forward to 2018. With many accomplishments under our belt and so much ahead of us in the future of NF research, clinical care and community engagement, we remain ingrained in our roots as a volunteer-driven organization. Our small but mighty staff of about 35 people, under the direction of the fearless and innovative Annette Bakker, President and Chief Scientific Officer, could not do the work that we do if it wasn’t for the hundreds of people who step up for us year after year to donate time, talent and treasure to the cause we all hold so dear. From event day volunteers, those who obtain Proclamations and Shine A Light participation, DIY event organizers, NF Walk Chairs and committees, NF Endurance athletes, I Know a Fighter 5K race committees, to the families who wear our awareness apparel and participate in our events, fundraisers, educators and those who share, comment, and like our social media posts, we are indebted to all that you do to ensure the success of our mission: Drive research, expand knowledge and advance care for the NF community.
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The National Neurofibromatosis Foundation began in 1978 with a few dedicated people who often met around someone’s kitchen table and now, 40 years later, endures as an organization fueled by grassroots efforts. National Volunteer Appreciation week only happens once every year, but all year long the Children’s Tumor Foundation celebrates the impact of volunteer service and the commitment it takes to build a strong Foundation from the humble dream of one person to the shared vision of a powerful worldwide community of many.
