Page 56 - Lauren Lolo Spencer Issue

us, 3x Superbowl Champion, former Washington Com- mander and Denver Bronco, Mark Schlereth.
be that children with Down syndrome are more likely to present with clonal hematopoiesis (CH), a process in which a blood stem cell acquires a genetic mutation that promotes replication.
Abby Ashbrook is our 2023 AcceptAbility Gala Ambassador. And of course she rocked it on stage and on the step and repeat. She has a remarkable family so we are super lucky to have them as part of the GLOB- AL family.
Cooper: One hundred and fifty times more? Whitten: Yeah, a crazy number.
Cooper: That was a lot of information. You did a really good job. (laughs) That’s a lot of material. I think you could go on to what the research is about.
So, the cancer relationship is what got Dr. Espinosa involved. But then he couldn’t help but see the whole systems biology black box, and he was like, “Wow, why haven’t we done this or this or that?”
Whitten: A big part of the GLOBAL strategy was creat- ed by my dad and our dear family friend Quincy Jones. Their plan, to make a measurable, significant impact, not just for Sophia, my daughter, my dad’s granddaugh- ter, and the apple of Quincy’s eye, but everyone with Down syndrome. Because they’re very strategic thinkers, their idea was if we could increase that NIH funding, we in the meantime would work very hard to rebuild the pipeline for Down syndrome research with philanthropic dollars to reestablish the pipeline. And then if we were successful—of course my father (John Sie) and Quincy would say “WHEN” we’re successful – then our scientists would be in good position to get NIH grants because they were already doing the work and would have data and information that they could bring to the table.
He was coming from the cancer field where anybody could look up anything about the different cancers because the field was well-funded and very sophisticat- ed. The Cancer Institute at NIH had mandated that information be shared almost immediately from scien- tists they fund, de-identified of course, to accelerate science and provide a foundation for new scientists entering the field.
Of course, me and my amazing hardworking staff were the ones on the front line, and there were times where we had our doubts. In the end it took almost 10 years to reach that goal.
He was coming from an overpowered sector of science to a very underpowered, minimal sector of science. Ever since then he’s been applying his cancer stan- dards. The exciting news is that he had the Crnic Insti- tute join forces with CHOP and Sage Bionetworks and they received the large NIH Down Syndrome National Data Coordinating Center grant so now the Down syn- drome field is providing all this great de-identified data in real time which provides us scale and a pipeline of information for new scientists.
So in the end the strategy worked! The Crnic Institute for Down Syndrome, and if you remember at the time, it was Tom Blumenthal, who’s a brilliant, beautiful man, our first executive director, who then recruited one of the most brilliant, internationally renowned can- cer specialists, Dr. Joaquín Espinosa, who has been our fearless director since 2017.
When we started GLOBAL there was one clinical trial where a drug was being tested to benefit people with Down syndrome. Today, with NIH INCLUDE funding, there are approximately 11 and we are proud to have grants for 4 of those at the Crnic Institute.
Dr. Espinosa was initially interested in why people with Down syndrome are protected from solid tumors and so predisposed to blood cancers. One of the important studies that came out of Crnic recently was on blood cancers showing the predisposition to acute lymphocyt- ic leukemia (ALL) and acute myeloid leukemia (AML) compared to people without Down syndrome. The study provide insights into the cause of this and poten- tial differentiated treatment. Here’s the study publica- tion from 3/2021 & excerpt.
Crnic Immune Monitoring Station, Scientists & Self- Advocates Connor, Alan & YaridaCrnic Immune Moni- toring Station, Scientists & Self-Advocates Connor, Alan & Yarida
Children with Down syndrome are 20-times more like- ly to develop acute lymphocytic leukemia (ALL) and 150-times more likely to develop acute myeloid leukemia (AML) compared to their typical peers. According to a new study by researchers at the Linda Crnic Institute for Down Syndrome, the reason could
Whitten: There were three key things that that helped our lobbying and advocacy to establish INCLUDE and increase Down syndrome research from $27 million in 2016 to $130 million in 2023. First, Dr. Espinosa and his team made a huge scientific breakthrough in 2016 whereby we are now able to categorize Down syn- drome as an immune system disorder.
56 ABILITY
Cooper: What was the first clinical trial for, and what are the others?
Second, because of our stellar GLOBAL DC Team (Erin Book Mullen, Laura Simmons, Kevin Brennan and others at W&J and Bluebird Strategies) we were allowed to testify before Congress about the discrimi- natory lack of funding for Down syndrome research.