Interview

Interview with Mark Bradford, President of Jerome Lejeune Foundation What drove you to work for the Jerome Lejeune foundation? Any specific relations or interests? "I met the director of the foundation in Paris in December 2010 and learned about the work of the foundation for the first time. We have a son with Down syndrome, so of course I was interested to hear about the research that was being done, and the foundation’s contributions in that area. When they decided to open an office in the U.S., they asked if I would be willing to head it, and I agreed. Over the years, what contributions have you made towards the foundation’s growth? "The Jerome Lejeune Foundation was established in the US on July 1, 2012. We had nothing but a promise of support from Paris. Everything that has been built since then has been my responsibility. We are now a part of the NIH Down Syndrome Consortium, we have close to 13,000 Facebook followers, a growing mailing and email list, great relationships with the research community in the US, I continue to be invited to speak for conferences and local organizations around the country, and we are funding 6 – 8 researchers every year working to improve the lives of those living with Down syndrome and other genetic intellectual disabilities." What does being the president of the Jerome Lejeune foundation mean? What type of tasks do you do? "I value my role as president of the Jerome Lejeune Foundation USA. Since we are small, I do pretty much everything. Everything that you see come from the foundation in print, at our website and social media, etc, is the work I do. I raise money, vacuum the floor, keep up with the latest developments in research, answer the phone – you name it, and I do it." Did you personally know Jerome Lejeune? And if so, is there anything special you’d ​ take away from your relationship with him? "Unfortunately no. But I know his family well. His wife, Birthe is still working at the foundation office in Paris every day at 87 years old. Everyone that I meet who did have the opportunity to meet Jerome Lejeune were in some way changed by the encounter. I’m envious!" With continuous research provided by the funds collected, are you seeing that progress ​ is being made towards improving the lives of those affected by genetic intellectual disabilities? "Absolutely. As I said, I first met the foundation in December 2010 and since then clinical trials have begun on drugs that we hope will improve the lives of those living with Down syndrome. There are now something like 6 clinical trials underway, and we are funding 2 of them. Actually, one of those is our own trial at the Jerome Lejeune Institute in Paris on the  use of folinic acid and thyroid hormone to improve the psychomotor development of infants from 6 to 18 months old." Are you a key speaker in the educational programs, publications, and bioethical ​ debates, which are used to ensure that individuals with genetic intellectual disabilities are understood and respected? If so, what is that like? "Yes. In fact, I spoke to pediatric residents in El Paso, TX last week about developments in research and then to parents at the Gigi’s Playhouse there in the evening. I will be speaking at the Down Syndrome Affiliates in Action conference in early March, etc… My early background was in education and I love to go out to speak for groups. There are a lot of sensitivities around Down syndrome both in the area of research to improve cognition, and in the issue of prenatal diagnosis and abortion. You have to be truthful but diplomatic and find ways to relate to all these groups. I love it!" In research today, the question of a “cure” for down syndrome is readily arising. Do you believe this is a possibility? "That is a really big question. Not too long ago I would have said it is an impossibility, but there has been research since 2013 that shows in cell cultures in a lab, the extra chromosome can either be completely shut down, or the cells can be treated with a protein so that when they replicate, the majority of them cast off the extra 21st chromosome. Science is moving so fast, I think it would be unwise at this point to say that anything is impossible. The question always remains, however, whether or not we SHOULD do something just because we have the capability. Science and ethics is always in a state of dynamic tension." Are you able to explain your mission of care in greater detail, meaning explaining the ​ purpose behind the ideas? "Jerome Lejeune was first and foremost a medical doctor who cared for patients. The Jerome Lejeune Foundation was established by his family after he died to continue his life’s work, which was in the areas of medical care, research, and advocacy. We have a medical clinic in Paris that seems a few thousand patients each year. We are too young, and too small in the US to open a clinic here, but we have worked with local organizations to try to help them establish centers for care – especially for adults – and are very interested in working in any way we can to ensure that those living with Down syndrome have long and healthy lives."