Page 54 - Lauren Lolo Spencer Issue

times nonprofits kind of start here and reinvent them- selves and reinvent themselves and that is challenging. Fortunately, we’ve been steady, and that allows us to build a foundation, compound growth and see the fruits of that labor over a long period of time. One of the main things—if you remember, Lia and Chet—is that we had identified from the National Institutes of Health, from the executive director himself—at the time it was Elias Zerhouni—that Down syndrome was the least-funded genetic condition by the NIH. Around the time Sophia was born, the funding for Down syn- drome research was about $18 million versus close to $200 million in that same year for autism.
to see that over and over again. At this hearing, we had at the time Chairman Tom Cole and Ranking Member Rosa DeLauro, Republican and Democrat, very respectful of each other and coming to mutual under- standing even though they have very differing views.
Back then the numbers the NIH funded per disease or condition were not public. So, Dr. Elias had his people pull all those numbers, and he, himself, was very sur- prised. And he said, “If you do one thing, create an institute that does research in medical care for Down syndrome. Autism has it, Fragile X has it, you don’t have it.” He was so knowledgeable and inspiring so that’s part of why we did what we did. We created GLOBAL and we created an Affiliate model, thinking that GLOBAL can’t do everything. So, (we have) the Crnic Institute at the Anschutz Medical Campus to do basic and clinical research including Alzheimer’s research, the Sie Center for Down syndrome at Chil- dren’s Hospital Colorado (a top 10 hospital) providing the best pediatric care, and since 2011, we have an adult clinic at Denver Health. So, that’s new, but that was always in the plan. The only accidental thing we did was we created the Alzheimer and Cognition Cen- ter affiliate, which is half under Crnic and half under the Neurology department at the University of Col- orado School of Medicine on the Anschutz Medical Campus because of the unfortunate very close tie between Down syndrome and Alzheimer.
During the hearing in 2017, everybody on the House Labor HHS Sub Appropriation Committee that over- sees the NIH budget was shocked at the lack of funding for Down syndrome research. Afterwards, they moved quickly forward in requesting NIH to create a trans- NIH program, called INCLUDE, to fund additional Down syndrome research. INCLUDE is made up of 18 different NIH Institutes (for example the National Insti- tute of Aging, the National Institute of Heart, Lung Blood, and the National Institute for Child Health and Human Development (NICHD).
Martirosyan: So, you’ve had this affiliate model, which is very unique, where it’s GLOBAL and four other affiliates?
We have come such a long way! we were at about $27 million before the hearing and as of fiscal year 2023 we are at $130 million.
Whitten: GLOBAL’s daunting task is to do the govern- ment advocacy and the development fundraising and the outreach for not only GLOBAL but for all of our Affiliates. That’s what we’ve been doing.
Cooper: Nice.
Fast forward, and the big thing that happened between 2011 and now was in October of 2017, when we had a seminal first-ever congressional hearing on Down syn- drome research. It’s really rewarding work, because what we see that other people perhaps don’t get to see, is a government that is bipartisan. When the Republi- cans and the Democrats come together about NIH fund- ing or Down syndrome research and medical care fund- ing, they are actually in agreement and very respectful and working together. We like to think that people with Down syndrome bring out the best in us and that they bring people together. In today’s world, that seems like a unicorn, so we’ve felt very privileged over the years
Whitten: Each year it’s has grown. It was $60 million, $90 million, then about $10 to $15 million a year after that. If you remember, in 2011 I talked about how when something gets defunded at NIH, scientists don’t go into that field because they know there’s no funding. So, back then we were deprived, that there was a seri- ous dearth of Down syndrome researchers. People interested in intellectual disabilities went into autism or Fragile X where there was funding.
54 ABILITY
We still have the primary funding through NICHD, but now we have INCLUDE which makes sense because one of the things that we brought to light is that people with Down syndrome have a radically different disease spectrum, where they’re highly predisposed to certain diseases, like Alzheimer’s and autoimmune diseases, and then they’re highly protected in things like solid tumor cancers, or certain kinds of heart attack or stroke.
So many other areas are affected too. For example, we know in people with Down syndrome hearing and speech is affected, so it makes sense that the National Institute of Deafness and Other Communications Disor- ders supports INCLUDE. We worked so hard over the last 14 plus years to lobby and advocate for increased federal funding for Down syndrome research and med- ical care and we are very grateful to have succeeded.
Today we’re seeing a renaissance of Down syndrome research and medical care because of the funding we’ve advocated for. And that feels great. An important note is our community now better understands that research and medical care go hand in hand. Without the research, we can’t have the guidelines. Without the guidelines, we can’t have evidence-based practice that provides better healthcare.