Page 59 - Lauren Lolo Spencer Issue

By the way, this is what INCLUDE stands for: INvesti- gation of Co-occurring conditions across the Lifespan to Understand Down syndrome.
many, many different directions. I’m really proud of that.
Cooper: This is really great. This is a little bit of a com- plicated math and research concept, but if you can go into those results of psoriasis, all the things that you just showed, if you could find the data of how much the medical costs of those people are occurring, you could do an analysis to see how much money would be saved by increasing your research and funds.
On the Alzheimer side, just like we have the brilliant Dr. Joaquín, we have the brilliant Dr. Huntington Pot- ter. Another thing: we put in $1 million and Alzheimer Association put in $1 million for his Leukine trial because NIH doesn’t tend to invest in exploratory work. And the results of that are also amazing. It’s the first phase two trial of any Alzheimer treatment that improves memory plus all three biomarkers. It’s early days, we’ve only had 60 people in the study and now we have to go to hundreds and more and more. But as part of that funding, we got the $7.5 million NIH grant to complete that trial network for Leukine in people without Down syndrome.
Whitten: Exactly. Boats are rising, not just ours. We do hope that all the scientists receiving INCLUDE Down syndrome research funding appreciate the decade-long work that went into getting those funds and the annual advocacy and lobbying work that goes into maintaining and increasing those funds.
Just recently we were so pleased to receive another 5 year clinical trial grant from NIH to look at Leukine in young adults with Down syndrome and see how it affects cognition even before they get Alzheimer. If you remember, Chet, one of the markers for Alzheimer’s in typical people is having three copies of the Amyloid Precursor Protein (APP) gene instead of two. That pro- tein is on chromosome 21 so everyone with Down syn- drome is born with three copies of APP and it is esti- mated that somewhere between 60-70% of people with Down syndrome will develop Alzheimer’s dementia.
At the end of the day we just want parity or our fair share. And with all the Congressional approvals of large increases in NIH funding that should be more than possible. Autism has been over $200 million a year for nearly two decades. Our ultimate goal is to get Down syndrome research to a steady state of over $200 million.
One challenge we had is that while Down syndrome is the leading cause of developmental delay in the US and the world, the numbers are relatively small. As of 2023, the most recent statistics would put the number at well over 400,000 people with Down syndrome in the U.S.
So we are HIGHLY motivated to cure Alzheimer’s and we are deeply grateful to the National Institutes of Aging at NIH who are so caring, forward thinking, and have invested a lot in our Down syndrome population.
To address that, my father coined the phrase “therapeu- tic leverage.” The idea being studying people with Down syndrome can also benefit hundreds of millions of people without Down syndrome.
A great way anyone can help with our work is to give blood. It is easy to do and in fact our big discovery that Down syndrome can be categorized as an immune sys- tem disorder came from only 200+ participants who gave blood!
To be clear, elongating life and improving health out- comes for people with Down syndrome is THE goal but if we can also improve the health of others we are more likely to capture the attention of Congress, NIH and others.
Another important topic is the seeming disparity of lifespan for African Americans with Down syndrome. As you know, Chet, we lost our beloved Ambassador DeOndra Dixon (Jamie’s sister) in 2020, and that was beyond tragic. I can’t tell you what a loss we feel every day without DeOndra.
And this makes sense because people with Down syn- drome are highly predisposed to Alzheimer’s, all man- ner of autoimmunity, and blood cancer and highly pro- tected from solid tumor cancer and certain types of heart attack and stroke. If you take the top five of these diseases, that represents about 60% of American deaths from those diseases. I think there’s a there, and that’s why this is working.
Her whole family was part of our GLOBAL tribe and she was our energy and life-blood at every fashion show. We are still not recovered. We will make sure she is always loved and never forgotten. As you know her family, Mr. Dixon, her big brother Jamie Foxx, sister Deirdra, and Kim supported DeOndra growing up to become perhaps the most well-spoken, included, lov- ing, and engaging person we had the privilege to travel with. And their support of GLOBAL along with Quincy was really what started us.
In the five years, our Crnic Institute has received 67 NIH awards and published 180 publications.
And we’re not just looking at Alzheimer’s, cancer and autoimmunity. We’re looking at Down syndrome and autism, Down syndrome and mood dysregulation, anxi- ety, executive function, we’re coming at cognition from
So we really do need to address this disparity of lifes- pan where a couple of research papers put the lifespan
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