The Children’s Tumor Foundation launched in 1978 as the National Neurofibromatosis Foundation (NNFF), established by NF patient Lynne Courtemanche, RN, her doctor Allan E. Rubenstein, MD, and attorney Joel S. Hirschtritt, Esq. A young child at the time, Ken Rudd’s mom, Joan Engel, was President of the Foundation from 1981 through 1984. Ken is now a member of CTF’s Board of Directors.
As we celebrate 40 years of driving research, expanding knowledge, and advancing care for the NF community, we asked Ken to reflect on the early days of the Foundation, how the community has grown, and the progress made in NF research for treatments and a cure.
The Children’s Tumor Foundation (CTF): Ken, thank you for taking the time to speak with us about the history of the Foundation. What do you remember about the early days, when your family first became involved?
Ken Rudd: I was pretty young at the time. Both my folks became heavily involved, with my father, Nick Rudd, providing strategic planning for the Board. My mother became president and did a superb job in those early days. At that time, the Foundation didn't have a paid professional staff and it still didn't have office space. In those early days it was run out of the den in our apartment. I have this vague memory of there not even being an answering machine. If no one was home, the phone would just ring and ring.
Since I was young, I don't have a strong memory of professional staff being hired. But I do know that my father had a great deal to do with bringing on Peter Bellermann [President from 1986 through 2005]. It's just been remarkable to watch the growth since then, because he got very involved in not only raising money, but in funding research, advocating for CDMRP [Congressionally Directed Medical Research Program–Neurofibromatosis Research Program, a medical research program through the Department of Defense budget] dollars, creating a very real and very well respected Foundation, and getting researchers involved in the effort of collaborative research. That continues to this day. So it's been remarkable.
What's kept you involved through the years?
I think my involvement really stems from two things. It stems from the fact that I have NF and I want the voices of adults and professionals with NF to be heard. I also feel a familial and historical tie to the Foundation. Given how important it was to my folks, and how involved they were early on, I want to keep that legacy alive.
I also very much want to ensure that the voices of adults with NF are heard, and that people living with NF serve on the Board. The majority of CTF’s board members are parents of affected children and spouses of those who are affected. So having Board members with NF, having their voices heard and having them contribute to the decision-making is important. And it's important to the longevity of the Foundation. And quite frankly, to our various constituents such as donors, other concerned people, and the medical and research community—their knowing that people with the disorder are taking part in our mission, I think is very important.
There have been a lot of developments and accomplishments in the last forty years. Can you reflect a little bit about the scientific advancements that have been made since the late 1970s?
I was in college when the NF1 gene was identified, and I remember being thrilled with the opportunities that seemed to present. I also recall learning that the two labs that separately identified the gene decided to publish contemporaneously. I didn't have a very good understanding about what that meant at the time, although I did know that researchers understandably like to be first to publish and receive credit for their accomplishments.
But it really was very remarkable that two different labs were publishing at the same time and not fighting for their own unique credit for having done this incredible thing. This spirit is reflected in the Foundation Synodos team research model, which moves NF research forward through the sharing of information. To have scientists share their data sets with each other, share their conclusions with each other, share successes and failures—all of that can only be good for NF research.
Where do you see the Foundation headed in the next forty years?
Quite simply, I want to put ourselves out of business.
It would be just awesome that, if, in forty years, we had accomplished our goal. We had a cure for NF. We had ended NF. That would just be remarkable.
I’ll admit that I can’t say I'm always optimistic about that possibility. NF is tough. But in forty years, it would be really amazing if we had such advanced treatments for NF and its various manifestations that it was not nearly the concern that it can be for children with NF, for their parents, and for adults with NF. Having ways to treat difficult and dangerous tumors safely and effectively would be extraordinary.
Is there anything else that you want to add?
I think that the Foundation has been fortunate to have had a series of remarkable and dedicated leaders. Going from the early days with Allan and his colleagues, through my mother, Peter Bellerman and John Risner, they all just did an incredible job with the Foundation.
Now, as we move forward under Annette Bakker, [President and Chief Scientific Officer of the Children’s Tumor Foundation since 2014], she, too, has done an awesome job. We have incredible, dedicated staff members and Board members. I very much look forward to the next period in the Foundation. I really anticipate that the Foundation will continue to have great successes in funding research, bringing together researchers, and in moving forward our goal to end NF.
The Children’s Tumor Foundation continues a celebration of 40 years of fighting NF. Click here to read more about our anniversary. Click here to read our conversation with Ken’s mom and former President, Joan Engel. Click here to read more about what Ken has to say about living with NF, from the 2017 This is NF portrait series. Click here to read the latest issue of NF News, the official newsletter of the Children’s Tumor Foundation.