Michelle Sie Whitten — the Force Behind the Global Down Syndrome Foundation

Be Beautiful Be Yourself Fashion Show
Be Beautiful Be Yourself Fashion Show

Michelle Sie Whitten, Co-founder, President, and CEO of Global Down syndrome Foundation (GLOBAL) is a friendly and intelligent force. Inspired by her daughter Sophia, who was born with Down syndrome, GLOBAL has had the same mission since its conception. They focus on spreading awareness that people with Down syndrome are important members of society and that they have been deprived of fundamental human rights and civil rights, such as medical care and research. Michelle, a longtime friend of ABILITY, had a chat with Chet Cooper and Lia Martirosyan on the latest with GLOBAL, including how GLOBAL’s hard work and persistence lead to exciting new research as well as publishing the peer-reviewed paper: “Medical Care Guidelines for Adults with Down syndrome.”

Lia Martirosyan: We haven’t chatted since 2011, any updates, any news?

Michelle Sie Whitten: (laughs) Oh, my gosh. The great thing about GLOBAL is that we have never changed the mission in our work – to dramatically improve the lives of people with Down syndrome through research, medical care, education & advocacy. I think a lot of times nonprofits kind of start here and reinvent themselves 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 syndrome research was about $18 million versus close to $200 million in that same year for autism.

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 surprised. 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 Children’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 Center affiliate, which is half under Crnic and half under the Neurology department at the University of Colorado School of Medicine on the Anschutz Medical Campus because of the unfortunate very close tie between Down syndrome and Alzheimer.

Martirosyan: So, you’ve had this affiliate model, which is very unique, where it’s GLOBAL and four other affiliates?

Whitten: GLOBAL’s daunting task is to do the government 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.

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 syndrome 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 Republicans and the Democrats come together about NIH funding or Down syndrome research and medical care funding, 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 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 understanding even though they have very differing views.

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During the hearing in 2017, everybody on the House Labor HHS Sub Appropriation Committee that oversees 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 Institute of Aging, the National Institute of Heart, Lung Blood, and the National Institute for Child Health and Human Development (NICHD).  

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 Disorders 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 medical care and we are very grateful to have succeeded.  

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.

Cooper: Nice.

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 serious dearth of Down syndrome researchers. People interested in intellectual disabilities went into autism or Fragile X where there was funding.

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.

That has been a huge win for our communities towards our two goals of elongating life and improving health outcomes.

I think I should mention some of our other Congressional Champions in addition to Representatives Rosa DeLauro and Tom Cole. There’s Cathy McMorris Rodgers, whose son Cole, happens to have Down syndrome, and she has been on this journey with us from beginning. This year our AcceptAbility Gala honored Congressman Pete Stauber, whose son Isaac has Down syndrome, and Democratic Whip Katherine Clark with GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. Every year we honor one republican and one democrat. And we are creating two new awards, Chet and Lia—

Cooper: That’s the name of the awards, Chet and Lia?

(Laughter)

Whitten: No, no. One is the Tom Cole GLOBAL Advancement Award, and one is the Rosa DeLauro GLOBAL Advancement Award. That is to acknowledge these two Congressional Champions in particular, are responsible for establishment of the INCLUDE Down syndrome research funding program at NIH and the increase in that funding.

This is very much congressional effort. While we have wonderful champions at NIH, and I do think there’s been a sea change where they’re embracing the INCLUDE program, it is still congressional directive and each year we are in DC advocating with our amazing self-advocates and families for appropriated funds. It’s hard work but it’s the key to elongating life and improving health outcomes for our loved ones with Down syndrome.

2022 AAG Senator John Hickenlooper, Delegate Eleanor Holmes Norton, Frank Stephens and Michelle
2022 AcceptAbility Gala Senator John Hickenlooper, Delegate Eleanor Holmes Norton, Frank Stephens and Michelle.

We also have our own Senator Hickenlooper now, he used to be our governor and mayor. He is a huge advocate along with Senators Michael Bennet and Chris Van Hollen. And then on the other side of the aisle, we have Senator Steve Daines and Senator Jerry Moran.

We also have amazing artists perform at our AcceptAbility Gala each year. This year we had GRAMMY© nominated, multi-platinum singer-songwriter Gavin DeGraw and he was beyond spectacular! At one point he got down from the stage into the audience and asked a self-advocate, Eric, what his favorite song was. And to everyone’s surprise he got a 2nd microphone and sang “With a Little Help from My Friends” by the Beatles with Eric and it sounded great because he somehow worked his magic!

We also had one of our favorite football players with us, 3x Superbowl Champion, former Washington Commander and Denver Bronco, Mark Schlereth.

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 GLOBAL family.

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.

Whitten: A big part of the GLOBAL strategy was created 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 granddaughter, 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.

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.

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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 cancer specialists, Dr. Joaquín Espinosa, who has been our fearless director since 2017.

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 lymphocytic leukemia (ALL) and acute myeloid leukemia (AML) compared to people without Down syndrome. The study provide insights into the cause of this and potential differentiated treatment. Here’s the study publication from 3/2021 & excerpt.

Children with Down syndrome are 20-times more likely 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 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.

Cooper: One hundred and fifty times more?

Whitten: Yeah, a crazy number.

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?”

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 sophisticated. The Cancer Institute at NIH had mandated that information be shared almost immediately from scientists they fund, de-identified of course, to accelerate science and provide a foundation for new scientists entering the field.

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 standards. The exciting news is that he had the Crnic Institute join forces with CHOP and Sage Bionetworks and they received the large NIH Down Syndrome National Data Coordinating Center grant so now the Down syndrome field is providing all this great de-identified data in real time which provides us scale and a pipeline of information for new scientists.  

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.

Crnic Immune Monitoring Station, Scientists & Self-Advocates Connor, Alan & Yarida
Crnic Immune Monitoring Station, Scientists & Self-Advocates Connor, Alan & Yarida

Cooper: What was the first clinical trial for, and what are the others?

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 syndrome as an immune system disorder.

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 discriminatory lack of funding for Down syndrome research.

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 someone 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!

DC Hearing Frank Stephens presenting in 2017
DC Hearing, Frank Stephens presenting in 2017

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 million, $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 discovery 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 typical, like you and me, it turns on when we fight virus and infection, and when it’s done it turns off. Our discovery was that the interferon pathway is lit up and on 24/7 from birth to death in people with Down syndrome. 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 there are all sorts of immune conditions, and cognition deficit. There are immune cells in our brain as well.

This also means that inflammation is a huge issue in our children and adults. That was our big discovery. What we didn’t realize as we were making that discovery–but we realized quite quickly–is that there is an FDA-approved drug for rheumatoid arthritis that brings down interferon. So, we got the first clinical trial from NIH to test a class of drugs called JAK inhibitors that normalize interferon in people with Down syndrome. We were first testing people with skin immune conditions that are very visible: alopecia areata and psoriatic arthritis. A lot of people with Down syndrome have those. And the more terrible suppurativa boils. We were testing for a safety trial over a year period, just to see if it was safe.

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Sixteen people, even after they left the safety trial—Now we’re recruiting more people—the results are astounding. The majority of people in that trial, their primary physicians or doctors have continued them on a JAK inhibitor post-trial.

Cooper: Was this a blind study? A tolerance study?

Whitten: Unfortunately there’s this thing called Down syndrome Regression, where someone with Down syndrome (and this includes someone who may have many motor and communication challenges to someone who is living and traveling independently) suddenly regresses to the point where it is difficult for them to feed or dress themselves.

You can imagine how devastating that is to families. There has been no rhyme or reason. We’re just getting an understanding of what it is. We tried the JAK inhibitor on two patients in Colorado with regression and we were happy to see that it seem to reverse the regression. One of the patients has not relapsed for over a year.

Dr. Espinosa joined forces with Dr. Jonathan Santora at Children’s Hospital Los Angeles and now we have another clinical grant to test the JAK inhibitor in people with Down syndrome regression disorder.

So, the science is truly remarkable. One of the things I like to highlight is that since we advocated for and NIH launched the INCLUDE Down syndrome research funding project, we not only have $130 million in FY2023 but now there are 16 institutes at NIH funding Down syndrome research versus one or two and many had never funded Down syndrome research before.

By the way, this is what INCLUDE stands for: INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndrome.

Cooper: This is really great. This is a little bit of a complicated 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.

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.

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.

2017 DC Hearing Michelle Sie Whitten, Dr. Joaquin Espinosa and Frank Stephens
2017 DC Hearing – Michelle Sie Whitten, Dr. Joaquín Espinosa and Frank Stephens

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.

To address that, my father coined the phrase “therapeutic leverage.” The idea being studying people with Down syndrome can also benefit hundreds of millions of people without Down syndrome.

To be clear, elongating life and improving health outcomes 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.

And this makes sense because people with Down syndrome are highly predisposed to Alzheimer’s, all manner of autoimmunity, and blood cancer and highly protected 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.

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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, anxiety, executive function, we’re coming at cognition from many, many different directions. I’m really proud of that.

On the Alzheimer side, just like we have the brilliant Dr. Joaquín, we have the brilliant Dr. Huntington Potter. 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.

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 protein is on chromosome 21 so everyone with Down syndrome is born with three copies of APP and it is estimated that somewhere between 60-70% of people with Down syndrome will develop Alzheimer’s dementia.

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.

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 system disorder came from only 200+ participants who gave blood!

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.

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, loving, and engaging person we had the privilege to travel with. And their support of GLOBAL along with Quincy was really what started us.

So we really do need to address this disparity of lifespan where a couple of research papers put the lifespan of an African American or a Black person with Down syndrome at 36 versus 60 for a Caucasian, and we really want NIH and others to focus on that.

BBBY Fashion Show 2018 Paula Wilcox
BBBY Fashion Show 2018 Paula Wilcox

But here’s the problem. If NIH goes and says, “We’re going to do an RFP (request for proposal), and we’re going to do a clinical trial and enroll black people,” we have an interesting history with enrolling black people and people with intellectual disabilities in research and for very good reason. Don’t get me started with Willowbrook!

Cooper: Right.

Whitten: The assumption today would be that they would not show up. We need to think out of the box and help them think out of the box too, to say, “OK, the investment into this population may look different. It may go to a lot of outreach and education and medical care as part of the whole research plan.”

And you build and earn trust through that piece. Part of the whole plan is you give them resources that they need, you give them education that they need where they see good results. You give them medical care that they need and they see good results. You ask them to participate in research, and they’re just much more likely to do it. That’s our thinking on it and not just for our loved ones with Down syndrome who are black but frankly all people who are differently-abled.

It’s a little bit premature. We are still working on it. I think next year we’re hoping to have a hearing in Washington DC about this important issue.

In medical care, since 2011 we’ve more than doubled the number of pediatric patients that we’re seeing from 33 states and 10 countries. I think the last time we talked it was around 1,000, now it’s over 2,200 patients! It’s amazing what we’re able to do. We have a prenatal and newborn pamphlet that we created. That’s doing really well for pregnant women or newborn families. And then we’ve published probably the most definitive publication or study on behavior in children with Down syndrome by Dr. Lina Patel. She’s also published, I think, the best book on potty training in people with Down. It’s those important successes that we’re getting on the medical side of things.

We also launched, since 2011, a pilot adult clinic at Denver Health, which is our safety net hospital here in town. At least as important, perhaps ever more important since we last talked, it took us over five years, a lot of money, and more blood, sweat, and tears than I wish to remember, but we published the first-ever medical care guidelines for adults with Down syndrome. If you remember, in the 1980s, the average lifespan was 28, and that’s probably why our research was housed almost exclusively at the National Institute of Child Health and Human Development. Also, as you know, people with intellectual disabilities tend to fall off the map after high school anyway, socially, every which way, and medically as well. And our children’s hospitals are infinitely more accessible than our adult ones.

With the authors being made up of the medical care directors of every major adult center for Down syndrome in the U.S., we were able to use GRADE and PICOT framework, which is very complicated and arduous. It was very difficult because we’re trying to create best practices. What it revealed was what we already knew, that there’s no research for the best practices. And we were relying a lot on the 20-plus experience of each of the authors to inform the guideline. We went through 11,000-plus publications as part of the review process, looking at our inclusion and exclusion criteria for nine medical areas. Usually, a guideline is about a single disease like Alzheimer’s or diabetes. We’re trying to do a whole human. It seems impossible. How do you do a whole human?

Our senior director of research and medical care, Bryn Gelaro LSW, is leading this impactful initiative. We picked nine medical areas, and we did inclusion/exclusion criteria on research studies for all the major medical directors of the centers together. We came up with a really strong guideline, so strong that it was published in JAMA. We are now confident that any medical professional can now find these guidelines and because they are published in JAMA we believe nearly everyone will also feel confident and comfortable following them even if they have only one patient with Down syndrome.

Cooper: It’s peer-reviewed.

Whitten: Exactly. This is a problem. We did ask a lot of people to write the guidelines. We were like, “We’ll give you money,” but nobody wanted to do it because it was so difficult. So now we’re on this treadmill, Chet, and we can’t get off. We don’t want to wait another 20 years before the next one. Things are changing so quickly because of our great work in research and medical care. We also cannot not add new topic areas such as solid tumor cancers, leukemia, sleep apnea, eye vision and physical therapy unless we continue to invest and work hard. We have to add new areas! And then we have to go back and update the nine areas we already completed and so on.

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What we’ve promised the community is if they could invest in us over a five-year period we will update the adult guideline every sixth year. Usually, a small community like ours plans and fund-raises year-to-year. We need to break that cycle. If we want resources that require multiple years, let’s do multiple years together. Let’s invest and have impact together. Eventually, I would like to see some sort of endowment for that so that it is truly sustainable—because it’s hard. If we promise these for generations to come, how many six year intervals do any of us have? It has to transcend us as individuals, and I suppose endowment is the best way to do that.

But this has been game-changing. People are taking it to their medical appointments. We have a family-friendly version–because it is quite complicated–that people love. And of course, all of it is downloadable free on our website. We just did a Spanish and Japanese version. By the end of the year, we’ll have six more different languages that can be downloaded.

We’re really proud of all that. The other thing that happens is that we’ve got a grant to do a deep dive on eye and vision issues in people with Down syndrome. One of the wonderful, intended consequences of having 2,200 patients at the Sie Center for Down Syndrome at Children’s Hospital Colorado is that the ophthalmology department now has over 500 kids with Down syndrome! There, the irrepressible and brilliant Dr. Emily McCourt discovered that keratoconus, which can lead to complete loss of vision, is something that is way up in kids and adults with Down syndrome. And her findings have helped rewrite the eye care section of the American Academy of Pediatrics guidelines for children and adolescents with Down syndrome.  With the cross-linking, we can stop keratoconus in its tracks. We can’t reverse it, but we can stop it.

Whitten Family Photo
Whitten Family Photo

GLOBAL had underwritten the cross-linking machine, a Pentacam®, all this great equipment for the eye so that the medical professionals at the Sie Center and Children’s Hospital Colorado can really make a life-changing difference. Their first 18 patients who they used the cross-linking on had already lost vision in one eye–and that’s why they were the first in line. We were so surprised to learn that of those first 18 patients, NINE had had Down syndrome.

As you can see, we’re really proud of our work. The other thing we do have now is the prenatal and newborn pamphlet in Spanish and Icelandic, but we’re on the precipice of having that in six different languages by the end of June or early July. We’re excited about that.

We also now have an education center downstairs and plans for in 2024 or 2025 a coffee shop that hires people with Down syndrome in our building. We are doing a hotel employment training program with three hotels that are within a six-block radius of us. And then of course we have our award-winning magazine, Down Syndrome World™ which we love, and our quarterly webinars that are now on average attracting 400 people for each quarterly webinar. We’re very excited that we have co-invested in Regis University–although we’re tied with another Catholic university–to do a post-secondary program certificate for students with intellectual and developmental disabilities.

And because it’s Jesuit, the head of all the Jesuit universities is very excited, and we already have Creighton, Gonzaga, and Loyola saying that they want to adopt a similar program to the Regis program that we just launched.

Cooper: How’s Quincy, by the way? I haven’t heard from him for a long time.

Whitten: He and my father are no spring chickens! But they are doing amazing well. They totally have their cognition and continue to have the best ideas and wisdom. Their ideas and how they approach problems strategically or what they advise is still pretty amazing and spot-on. I’m forever grateful that I’ve had the luck of having many different mentors. My first mentor was Peter Barton in the cable industry. But we’ve just had a lot of people from different walks of life support GLOBAL, and again, personally, for me to have been mentored by many different people in the cable industry, including Sharon Magness Blake and Laura Barton and then my mentors at NIH – Dr. Hodes, Dr. Tabak, Dr. Gibbons  and Dr. Bianchi. I feel very lucky.

Martirosyan: What are your thoughts about the Barbie doll?

Whitten: The fact that Mattel is wanting to be inclusive, worked with a Down syndrome organization and created an inclusive doll is a huge step in the right direction. identity. However, I think it should be said, that there are many other dolls , even a baby dolls, with Down syndrome that have been available prior to this Barbie doll. I do think we should acknowledge those dolls and companies that have made a mark in terms of awareness and inclusion too. That’s the first thing. The second thing is to acknowledge that Mattel is a big company that has worldwide distribution is amazing! This is huge and I hope they can come out with additional Barbie Dolls with Down syndrome of different races, hair color, shapes and sizes.

Pat Winders and patient at the Sie Center for Down Syndrome
Pat Winders and patient at the Sie Center for Down Syndrome

OTHER BABY DOLLS WITH DOWN SYNDROME:
Miniland-Asian-Syndrome
Miniland-Baby-CAUCASIAN-Syndrome
Down-syndrome-reborn-doll-noah
Baby-boy-asian-with-down-syndrome

Cooper: The fashion show, I think I’ve attended a couple of them, how is that progressing, moving forward? Do you see any results from any of that of some of the people involved getting modeling gigs or acting gigs? Is there any connection to that? Once it’s done, does everybody go home and is happy about it?

Whitten: We have a lot of diversity within our models. Choosing the models is very difficult because on the one hand, people are auditioning based on their ability to walk the runway. On the other hand, we do want to be mindful of gender parity, age diversity, ethnic and racial diversity and we are part of a larger disability community so how is that reflected? There’s a lot that goes into choosing the models.

Michelle Sie Whitten and Sophia Women's day 2020
Michelle Sie Whitten and daughter Sophia, Women’s Day 2020

What we’re having more and more of are people who are already starting to be models or actors or wanting to be famous social media influencers auditioning. Traditionally our models would have just been any wonderful kid or adult who was attracted to this opportunity, not necessarily somebody who wants to be or is already a professional model.

Now we have this interesting mix of people who look at this as career building to put this on their resume, and others who just want the experience and as a result we hear their confidence improves tremendously.

Cooper: Nice. Anything else you’d like to add? You haven’t said much. (laughs)

Whitten: (laughs) When you’ve been over 10 years, come on! It’s been a long time!

Cooper: It’s a very impressive amount of work.

Whitten: Thank you.

Global Down Syndrome Foundation

DeOndra Dixon — in loving memory 1984-2020

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