Page 57 - Lauren Lolo Spencer Issue

2022 AAG Senator John Hickenlooper, Delegate Eleanor Holmes Norton, Frank Stephens and Michelle
Third, we had a secret weapon – Frank Stephens! Frank is a GLOBAL board member, a GLOBAL Ambassador and a GLOBAL Quincy Jones Exceptional Advocacy Awardee. He is also an actor and renowned public speaker who happens to have Down syndrome. It was important to us that Congress hear directly from some- one with Down syndrome.
During his five-minute testimony to congress, he received a standing ovation (apparently that’s never happened before). The ovation was driven by his famous words, “If you take one thing away, understand this: I’m a man with Down syndrome, and my life is worth living.”
That evening, his testimony went viral to a million views. And today it is over 200 million!
Cooper: Oh, my gosh!
Whitten: The other thing we were bringing to the table was Dr. Espinosa, who testified and was able to say that in 2016, Crnic, obviously with GLOBAL support, made one of the biggest breakthroughs in Down syndrome research in the last 20 years. And that is, through our finding, we are able to categorize Down syndrome as
an immune system disorder. The finding in 2016, and this was crazy, we had gotten blood draws through the Crnic Institute Human Trisome Project. Basically, Joaquín’s vision was, you get data. Why don’t we have data on these people? We don’t have natural history. We had little pieces here and there. It was underfunded. It wasn’t the scientists’ fault. The medical people were trying to do things, but when you’re getting $14 mil- lion, $16 million from NIH a year, what can you really do?
We raised money and there were two things we did which I think were really important. This is where the donor-return on investment is really great. We were able to look at the blood samples of 200+ people with Down syndrome. On just that number alone, the dis- covery that we made was the major immune system pathway in our body–which you probably heard about during COVID, that creates the cytokine storm–is called the interferon pathway. In people who are typi- cal, like you and me, it turns on when we fight virus and infection, and when it’s done it turns off. Our dis- covery was that the interferon pathway is lit up and on 24/7 from birth to death in people with Down syn- drome. It doesn’t turn off. It’s constantly taxing the immune system, which could help explain why there are no solid tumors, why as they get older faster, why
ABILITY 57