Recently, Janet Tryhuba, Executive Director of the Edmonton Down Syndrome Society, met with GLOBAL Vice President – Strategic Alliances, David Tolleson, to discuss her career and to share more about one of Canada’s leading Down syndrome organizations.

DAVID: Tell us a bit about yourself and how you got involved with the Edmonton Down Syndrome Society (EDSS).

JANET: I’ve always worked for charities throughout my career. I worked for the YMCA for over 25 years in progressive roles and that really solidified my interest in working with people from a variety of backgrounds in topics of health and wellness. I have a degree in recreation administration. The YMC

A taught me about the goals of charities around philanthropy and volunteerism. I’ve volunteered a lot for causes that are important to me and my community. My husband and I have two children, so a lot of volunteering occurred around activities involving them. The kids are grown now – the oldest has two children of his own – so my husband and I are enjoying being grandparents. My faith community is also very important to me. As my career at YMCA progressed, I evolved more into philanthropy and that became my focus in later years. I was responsible for all the fund development and marketing communication for YMCA here in northern Alberta. From there I went onto seven years with a local museum, the Fort Edmonton Foundation. Culture and history played a big role in that organization, as well as celebrating our city’s natural history and the people who have lived here. We raised a little over $3 million from our local community but leveraged $150 million in government grants. I really enjoyed that. I thought I might retire after that but ended up doing a little project management instead. As a result of that, I was recruited into my current position at EDSS. It’s a really good fit for me. I love the community, I love what we stand for, and I’ve really enjoyed helping the organization reach more of its full potential. This year we’re going to celebrate our 30th anniversary!

DAVID: That’s terrific! Do you have a personal connection to Down syndrome?       

JANET: I do, but not in the usual way. My sister and brother-in-law have always cared for adults with Down syndrome in their home. They’re both social workers and previously worked in group homes. They decided it would work better to have individuals come live with them in their home rather than them going to a group home, so they made that shift about 25 years ago, about the time they were having the last of their three children and continue to this day. It’s been a wonderful journey for me and my family as we’ve gotten to know these new additions to their family.

DAVID: And, has Edmonton always been home for you?

JANET: For most of my adult life. I came here for university and never left. I grew up about 3 hours from here in a small town of about 1,500 people.

DAVID: I’m interested to learn more about your programs for adults, children and families, including The Joey Moss Literacy Centre for Excellence.

JANET: Well, I’ll start by asking if you know who Joey Moss is?

DAVID: I didn’t until I looked him up!

JANET: Joey was a man with Down syndrome who was embraced by our city and our national hero, Wayne Gretzky, the star hockey player. Back in the day, Wayne was dating Joey’s older sister, so Joey got connected to the Edmonton Oilers that way and eventually became their locker room attendant for at least 25 years. When he retired at age 55, the Oilers gave him a proper send-off, even hanging a banner with his name in the arena. He was so loved by the team and our city. He had so many things about him that the community also loved, like at a game the camera would always focus on Joey, because he would sing our national anthem, “O Canada”, with such joy and animation. When you saw him, you couldn’t help but join in and sing louder! He really increased awareness of Down syndrome and people saw what a capable young man he was and what a great job he did. He really became a symbol of awareness and hope. And it wasn’t just with the Oilers. Our professional football team, the Elks, also had him work as their locker room attendant during the Oilers’ offseason. He was remarkable and when his parents were interviewed, they said they just raised him just like his 12 siblings. When we were building our literacy program and resource library, the Oilers gave a lovely gift in Joey’s name.

DAVID: What other programs do you offer?

JANET: We have a speech pathologist who delivers speech therapy at our office. We also have literacy built into our adult day program in a pretty significant way. Our day program has mostly young adults, but we do have participants all the way up into their 40’s and 50’s, which makes for a nice range of people. We also focus on communication and social skills in terms of relationship building. For example, we have a musical theater program, and the teachers focus on respect and taking responsibility for oneself, along with having fun. We also have youth and adult basketball programs and a weekly bowling group. And on alternating Fridays we offer an adult outing group or a youth drop-in program here at our center – lots of fun and games led by volunteer university students! We’ve also just launched a dance program this year. 

The next few months will be even busier as we offer summer day camps. One of our original core programs that is still popular is our drop-in preschool, where parents will bring their children and use our playroom and other facilities while the parents get to know one another. Along those lines, we also have workshops that focus on the earliest years. In a baby’s first year, we reach out to new parents, connect them to other parents, and also offer our one-day “Wonder Years” workshop to get them off on the right foot. Hopefully, they’ll continue to engage more with our community after that.

We also spend a good bit of time fundraising. Because of that, most of our programs are free, which is important to the families we serve. We serve a large geographic area. Pretty much all of northern Alberta, but we also have families coming to us from our far north, into the Northwest Territories, as well as neighboring Saskatchewan.

DAVID: What are the opportunities and challenges that you see on the horizon for people with Down syndrome in Canada?

JANET: The top issue affecting our families is the cutbacks in government services for children and adults with disabilities. We did see small progress in that our federal government approved a small tax credit for individuals with disabilities. Unfortunately, provinces were given the opportunity to claw that money back and some, like ours, have, which is ridiculous. I hate to use the word “fight”, but I’m afraid that’s what families must do – fight their government – which they really shouldn’t have to do. The other big challenge is finding housing for adults with disabilities. There aren’t great options, and it’s made worse by the current housing crisis in our country. It’s a complex issue and getting more difficult as the national housing shortage becomes more severe. Thankfully, we just resolved a third major challenge, which was having enough educational assistants in our provincial school system. The assistants went on strike, so kids with disabilities were told to stay home. We thought the school systems should reallocate teachers to make sure every student’s needs were met, rather than tell one group of children they just couldn’t come to school. It was a terrible situation, and our kids lost out on several months of education. It created a lot of stress and anxiety for families when times are already challenging.

On a more positive note, we are seeing the positive impact of early interventions, particularly in speech therapy. The kids who we’ve been able to work with are coming out further ahead than those who haven’t had early intervention. It helps us make arguments to the government about the importance of investing in early education. I’m also heartened by the progress in medical research, treatment, and care, and the growth in life expectancy. We’re a bit behind your country in that area and we have many challenges with our medical system, but we’re glad to have positive role models to emulate.

DAVID: You touched on the importance of medical research and medical knowledge and services. We’re grateful that the Edmonton Down Syndrome Society is supporting our work as a GLOBAL Member and that you’re also helping us update and expand the GLOBAL Adult Guidelines with a generous multi-year pledge. Why is this project and GLOBAL’s other research and medical care work important to you and the families you serve?

JANET: It’s extremely important, because you’re making progress in an area where I’d like to see our country do better. By supporting your work, I can point to that and say we’re doing what we can and hope that others, like medical practitioners, will do what they can by adopting the Guidelines for their practices and/or encourage more research in our country.

One area where we’re making a difference is reaching college students before they become doctors with community service projects. This year, we had over 40 students participate. It has really helped us increase awareness in that community.

DAVID: Is there anything we haven’t discussed that you’d like to share?

JANET: We are working to improve our own high standards through accreditation, which will help us gain more access to provincial government funding for our programs. We’re very close and looking forward to achieving that recognition!

Denver, Stillwater, Minn. –June 3, 2025 – Today, Global Down Syndrome Foundation (GLOBAL) and Down Syndrome Diagnosis Network (DSDN) are proud to announce a multi-year collaboration agreement to educate  moms of children with Down syndrome – particularly those in the early years – about important medical care resources and research opportunities.

The agreement  builds on GLOBAL and DSDN’s past five year collaboration and ensures hundreds of DSDN Rockin’ Mom® Retreat attendees can continue to participate in the GLOBAL Research & Medical Care Roundtable (GLOBAL Roundtable) as a free benefit. It also provides new collaboration and support for DSDN’s core parent resources, including peer-to-peer support groups and online communities hosted in the DSDN App, where families connect by birth year, co-occurring conditions, and shared identities.

The GLOBAL Roundtable has educated over 900 moms of infants and young children on cutting-edge scientific breakthroughs, clinical trials, medical best practices and more. Surveys associated with the GLOBAL Roundtable consistently average 4.8 out of 5, highlighting its impact. Anyone who has registered for the DSDN Rockin’ Mom® Retreat can register for the GLOBAL Roundtable for free. This year’s DSDN Rockin’ Mom® Retreat will be held in Pine Mountain, Georgia from September 19-20. The GLOBAL Roundtable includes welcome remarks from DSDN Executive Director, Melissa Shutwell, GLOBAL President & CEO, Michelle Sie Whitten, and GLOBAL Vice President for Research and Medical Care, Bryn Gelaro. Below is the 2025 GLOBAL Roundtable panel of renowned Down syndrome experts:

• Joaquín Espinosa, PhD, Executive Director, Linda Crnic Institute for Down Syndrome (Crnic Institute) –  Espinosa will discuss the latest research topics (including the first pediatric immune system dysregulation Jak Inhibitor clinical trial) from the Linda Crnic Institute for Down Syndrome.
• Nicole Baumer, MD, MEd, Director, Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado – Baumer will provide an overview of neurodevelopmental conditions (including Autism, ADHD) in early childhood and ways to support.
• Emily McCourt, MD, Chief of Pediatric Ophthalmology, University of Colorado Anschutz Medical Campus – McCourt will discuss the eye care needs for children with Down syndrome during their first few years of age (including keratoconus, strabismus, and glaucoma).
• Sujata Bardhan, MS, PhD, Program Director in the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH)– Dr. Bardhan will discuss The NIH INCLUDE Project: Accelerating Research Discoveries for People with Down Syndrome Across the Lifespan (including potential for families to get involved and participate).

“DSDN has supported more than 25,000 parents through our online peer-to-peer support groups over the past 10 years and has welcomed over 3,000 moms to our annual Rockin’ Mom Retreats,” says DSDN Executive Director and mom to a 9-year-old with Down syndrome, Melissa Shutwell. “The Rockin’ Mom Retreat is a chance to connect, recharge, and be inspired—and thanks to GLOBAL’s support, it’s also a space where attendees can stay informed about the latest research and medical care for their children. The GLOBAL Roundtable is a favorite among many of our moms, and we’re grateful to continue this collaboration to keep such a valuable resource at the heart of our retreat for years to come.”

“We have supported DSDN from its very early years, and we are amazed and impressed at how fast the organization has grown,” says Michelle Sie Whitten, GLOBAL President & CEO, and parent of a young adult with Down syndrome. “The information and network they provide for moms and families is so important and we are proud to be a part of that. Any mom who hasn’t attended a Rockin’ Mom Retreat should absolutely check it out!”

“Every year it is exciting to work with Melissa and her team and bring together world renowned Down syndrome experts to speak at the DSDN Rockin’ Mom Retreat GLOBAL Roundtable,” says Bryn Gelaro, GLOBAL Vice President of Research & Medical Care. “While the complimentary mimosa or sangria makes things fun, these moms are super smart and contribute so much to the conversation. I’m convinced this not only helps their own children but their local communities as well.”

To learn more about the DSDN Rockin’ Mom® Retreat, visit https://www.dsdiagnosisnetwork.org/mom-retreat-registration.

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About the DSDN

The Down Syndrome Diagnosis Network (DSDN) is the leading organization dedicated to supporting families who receive a Down syndrome diagnosis for their child. Since 2014, DSDN has supported more than 25,000 families through peer-to-peer support, medical condition-specific groups, educational resources, and community-building experiences. DSDN creates safe, inclusive spaces for parents to share their experiences, access real-time support, and build lifelong relationships that strengthen their ability to care for both their children and themselves.

In addition to its robust parent network, DSDN is a national leader in improving the Down syndrome diagnosis experience. The organization partners with healthcare professionals to provide training, resources, and direct feedback from families to ensure that diagnoses are delivered with empathy, accuracy, and immediate access to support. Through this work, DSDN is helping raise the standard for how Down syndrome diagnoses are shared and received.

DSDN is best known for its vibrant online support groups and its annual Rockin’ Mom® and Rockin’ Dad™ Retreats, which have welcomed thousands of parents for weekends of connection, rest, and inspiration.

Learn more at www.dsdiagnosisnetwork.org, and follow DSDN on Facebook, Instagram, LinkedIn, and TikTok.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,500 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, and LinkedIn.

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The Down Syndrome Alliance of the Midlands hosted its 7th annual Building the Future Gala on May 3rd, bringing together more than 400 passionate supporters, advocates, and community leaders for an unforgettable evening of celebration and impact. The event raised an incredible $212,000, with $10,000 of that total directly benefiting Global Down Syndrome Foundation in support of its groundbreaking research and advocacy work.

Held in Omaha, the gala highlighted the powerful connections and partnerships that drive progress in the Down syndrome community. The Down Syndrome Alliance of the Midlands was proud to recognize GLOBAL as a key partner in this mission, whose support and leadership continue to inspire local and national change.

The evening included a program honoring outstanding individuals and organizations who exemplify commitment and service to the Down syndrome community:

• Honorary Chair: Dr. Deborah Goebel – Celebrated for her years of compassionate care and advocacy.
• Mary McHale Leadership Award: Kendra Ely – Recognized for her tireless leadership and dedication to creating inclusive opportunities.
• Exceptional Advocate Award: Daniel Holm– Honored for his courage, voice, and impact as a self-advocate.
• Community Partner Award: Milthon Lopez, HardKnocks Omaha – Applauded for building a more inclusive community through boxing fitness and mentorship.

From inspiring speeches to generous giving, the Building the Future Gala was a testament to what is possible when families, professionals, and advocates unite around a shared mission. GLOBAL is honored to partner with the Down Syndrome Alliance of the Midlands in building a brighter future for individuals with Down syndrome and their families.

Prior to her retirement last month, Debbie Revels led the Down Syndrome Association of Jacksonville for 36 years. Under her leadership, DSAJ has grown into one of the nation’s premier local Down syndrome organizations.

In March, GLOBAL Vice President – Strategic Alliances, David Tolleson, caught up with Ms. Revels to talk about reflections on her career and why she’s not done contributing even as she transitions into retirement.

DAVID: Tell us a bit about yourself and how you got involved with the Down Syndrome Association of Jacksonville?

DEBBIE: In 1986, our son, Nick, was born and received a postnatal diagnosis. I was a very young mom, and he was our first baby, so the diagnosis was unexpected. What was odd about that situation is that I knew nothing about Down syndrome. What was tragic was that neither did the doctors, so they used all the words we no longer use to describe people with Down syndrome. Of course, there was no Google or even cell phones back then, so how we found others with children with Down syndrome is amazing, but 5 area families did find each other in the ensuing two years. We all had a horrible experience with both the diagnosis and a lack of support. So that was the impetus for the founding of DSAJ. We started with medical outreach to ensure healthcare professionals would no longer say the words that were used to describe our babies and to educate doctors that these are lives worth living and that have value. I became Executive Director in 2008. It’s been almost my entire adulthood and it’s been beautiful because I’ve seen the growth in local and national resources. There used to be nothing here and when you see that growth there’s a deep amount of pride and inspiration that comes from that. On the personal front, we have four children and seven grandchildren, so that keeps us super busy and, thankfully, Nick is happy and leading the life he wants to lead.

DAVID: What accomplishments are you most proud of during your tenure as Executive Director.

DEBBIE: There are three that jump to mind. First is our new parent outreach. I love holding all those babies! For my entire tenure as Executive Director, I’ve held onto that role, because I love it so much and I can relate to how the parents are feeling. When my retirement was announced, those were the remarks I received the most – “you were there when I needed you”, “I remember when you came to our home”, “I remember when you walked into the hospital”. I have so many stories of when someone had their termination appointment set for, say, a Wednesday, and I spoke with them on Monday and they changed their mind – not because of me, but because I could tell them the stories of the beautiful human beings with Down syndrome I know. I’m very happy that I was able to give people hope that it’s going to be okay and it’s going to be beautiful.

In addition to that, we launched an employment program five years ago. I only know of a handful of affiliates that have one. We’ve had such success with it. I’m always encouraging other Executive Directors to look into it. It’s not as scary as you think and it’s so successful! I think that comes from having known these children since birth and then seeing them grow up and graduate and then have to go out into a world that doesn’t know them, their personalities, their goals, their strengths, or their family dynamics. To be able to still nurture them on their journey by offering this program was ideal. I’ve seen our success, and the program is continuing to grow. I’m glad we ignored the fear of failing and embraced a new opportunity to serve.

Then definitely our work toward establishing a medical outreach enrichment center. It won’t be our program, but DSAJ will have a voice at the table and will support it financially. It’s still a vision, but I know in my gut that it’s going to happen.

DAVID: But you also had success on the residential front…

DEBBIE: Yes! We collaborated with The Arc Jacksonville with this residential program and spent time and money from our budget to ensure that it was built. The Arc couldn’t do it alone, so we spent years at our state capitol advocating for the need for a residential community then took money from our budget to help build it. It’s a model that can be used across the nation. Truthfully, some of the motivation was for my son. He still lives there independently and loves it. They have a waiting list of more than 100 people, it’s that good. DSAJ supports and collaborates with other associations locally and across the globe and I encourage other people to do the same.

DAVID: Along those lines, you’ve been actively involved on the national scene, and have been very supportive of GLOBAL’s research, medical and advocacy work, the project to update and expand the Adult Guidelines, and particularly as part of our Membership Advisory Board. Why is it important to you to be involved beyond the local level?

DEBBIE: Because we can’t do it all ourselves. The local groups can’t touch everything that needs to be touched. We don’t have the time, talent, or treasure to do it. The folks at GLOBAL are my people. You are doing things that no one else is doing or if they are doing it, they’re not doing it as well. I believe you stay in your lane well and stay focused and don’t get distracted. I love watching progress and I’ve seen it with GLOBAL. For example, the Adult Guidelines. Who would’ve thought those ever would’ve been published? So many organizations do the same thing over again or do something new that isn’t really needed or impactful. GLOBAL saw a critical need for adults and didn’t give up on it even though it was difficult. I was with a group of doctors just yesterday and they didn’t know that autoimmune issues are such an important part of our people’s lives. They don’t have a clue. And, what’s the point of living into your 60’s and 70’s if you don’t live well and aren’t happy? GLOBAL is actively working on that.

So back to your question, being involved on a grassroots level with the important things happening on the national level gives a great feeling of pride. It’s also nice that GLOBAL appreciates us and the work we do locally.

DAVID: You’ve always been such a dynamic, active leader that I can’t imagine you sitting on the sofa knitting. How do you envision your retirement and what are you most looking forward to?

Well, I’m not retiring from the disability community. I’m going to spend my passion and talents in a broader way and really focus on the adult population, their needs, particularly medical needs here in Jacksonville. Having more time to support the initiatives of the national groups is also my passion and part of my vision for the future. A Board member told me that volunteering is in my DNA. I hadn’t thought of it, but it really is. Having a child with a disability teaches you a new language and introduces you to a new community. And it doesn’t just change your life, it impacts your family, who also become givers and volunteers in this community.

I’m going to stay actively involved in all the efforts of the national groups. Everyone needs to be supporting federal advocacy now more than ever. I’m excited to be attending GLOBAL’s AcceptAbility Gala in Washington in May, because the outreach to Congress and the National Institutes of Health is important. I’m a mom first and foremost, and an advocate, and I want to support all your efforts. I’m retiring as Executive Director, but I’m retiring from the community!

DAVID: That’s great news for all of us! Any closing thoughts you’d like to share?

This has been a beautiful season of life and I’m so incredibly grateful for having this be a part of my journey. I wouldn’t have chosen it. When I was young, I didn’t say I wanted to have a son with Down syndrome and be an affiliate Executive Director. But it has been a wonderful experience. Still, I’m looking forward to what comes next. Already, I’m getting outside more and enjoying long walks in the morning – one of the advantages of living in Florida!

Global Down Syndrome Foundation Honored Reps. Aderholt and DeGette at Event that Featured Multiplatinum Artist & Actor Phillip Phillips and Inclusive Dance Team

2025 AcceptAbility Gala Step & Repeat Photos
2025 AcceptAbility Gala Program Highlights Photos

Denver, CO, May 23, 2025 – On Wednesday, the Global Down Syndrome Foundation (GLOBAL) held its seventh annual AcceptAbility Gala, Washington DC’s largest fundraiser for people with Down syndrome, raising $450,000 to support important research and medical care benefiting people with  Down syndrome. Representatives Robert Aderholt (R-AL) and Diana DeGette (D-CO) received GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award, and pledged their continued strong advocacy in Congress to improve the lives of people with Down syndrome.

“At GLOBAL, we work hard every day to elongate life and improve health outcomes for our loved ones with Down syndrome,” says GLOBAL Co-Founder, President, and CEO, Michelle Sie Whitten. “Last night we brought together a room full of bipartisan support from Congress, NIH leadership, self-advocates, families and corporate leaders, all celebrating the impact of GLOBAL’s work and a brighter future for people with Down syndrome. The joy and excitement at our event, and the tangible outcome of our work together, is truly rewarding!”

“People with Down syndrome are a beautiful reminder that we are all fearfully and wonderfully made in God’s image,” says Congressman Robert Aderholt. “I am honored to receive the Quincy Jones Exceptional Advocacy Award from GLOBAL and to support their important mission to extend life and improve health outcomes for individuals with Down syndrome. Last night’s AcceptAbility Gala was truly inspiring. It was a joy to be surrounded by so many incredible self-advocates, their families, dedicated professionals, and fellow Members of Congress. The evening underscored how vital continued investment in Down syndrome research is—not just for improving health—but for affirming the dignity and God-given worth of every life. It sends a powerful message to the world that individuals who are differently-abled have unique value and purpose.”

“It is an honor to be recognized by the Global Down Syndrome Foundation with the Quincy Jones Exceptional Advocacy Award,” says Congresswoman Diane DeGette. “Last night’s AcceptAbility Gala was truly a celebration of people with Down syndrome and what biomedical research at the NIH is doing to improve their lives. I am proud to have reintroduced the bipartisan DeOndra Dixon INCLUDE Project Act earlier this week which will ensure NIH continues to pursue innovative and groundbreaking research that includes people with Down syndrome. It is amazing what GLOBAL and my dear friends John Sie and Michelle Sie Whitten have built at the Crnic Institute and the Sie Center for Down Syndrome in Colorado. Together, we are creating a brighter future for children and adults with Down syndrome.”

Celebrities passionate about the cause included Multiplatinum Artist & Actor, Phillip Phillips; actor, author and public speaker Frank Stephens; author and public speaker David Egan; six-time Emmy® Award-winner Chuck Todd, and three-time Emmy® Award-winner Autria Godfrey who emceed the gala.

The evening was dedicated to long-time GLOBAL supporter and Frank Stephens’ mother, Cornelia “Corny” Stephens. Corny passed away after a long and courageous fight with Alzheimer’s disease. A video tribute also honored music icon Quincy Jones who passed away last November.

Held at the Marriott Marquis in Washington, DC, the event was attended by GLOBAL awardee alums, Representative Richard Hudson (R-NC) who presented the Quincy Jones Exceptional Advocacy Award to Representative Robert Aderholt, Senator John Hickenlooper (D-CO) who presented the award to Representative Diana DeGette, Representative Rosa DeLauro (D-CT) who presented her scholarship award, and Pete Stauber (R-MN).  

Representatives DeGette and Hudson, and Senator Hickenlooper, thrilled the audience when they announced the House and Senate reintroduction of the game-changing bill, the DeOndra Dixon INCLUDE Project Act. The bill will ensure that the trans-NIH Down syndrome funding program called the INCLUDE Project will continue to exist and grow. The bill is a legacy for the memory of GLOBAL Ambassador DeOndra Dixon who is Academy and Grammy Award-winning Jamie Foxx’s younger sister. Jamie Foxx is one of GLOBAL’s international spokespeople. It is also a testament to the dedication of the now-retired Representative Cathy McMorris Rodgers (R-WA).

To recognize the transformative leadership of two key Congressional Champions, the Rosa DeLauro GLOBAL Advancement Award with a post-secondary scholarship was provided to Leo Weeks from Herndon, Virginia and the Tom Cole GLOBAL Advancement Award was provided to Gabby Parillon from Lewes, Delaware. Representative Rosa DeLauro was on-hand to personally present the Advancement Award, leaving the audience inspired to do even more for people with Down syndrome and their families.

With the help of GLOBAL Ambassador Tucker Emry and his family, Erin Book Mullen, co-chairs Natalie Farr Harrison and her husband Guy Harrison, and our amazing Sponsors, the inspirational gala attracted 400 attendees and raised $450,000 for GLOBAL’s life-saving research and medical care. GLOBAL supports over 200 researchers on the Anschutz Medical Campus at the Crnic Institute for Down Syndrome and at the Alzheimer’s and Cognition Center, as well as 2,500 patients from 33 states and 10 countries at the Sie Center for Down Syndrome. For nearly two decades, Down syndrome was one of the least federally funded genetic conditions in the United States.

At the end of the evening, Phillip Phillips wowed the audience not only with his beautiful voice but by connecting with fans and bringing self-advocates with Down syndrome on stage while performing an intimate, heartfelt performance of some of his biggest hits including Gone, Gone, Gone and Home, and solo dancer Robert Wallop and inclusive dance team RhythmXpress delighted attendees with dance performances set to Papa’s Got a Brand New Bag and a Hairspray medley. 

Additional notables in attendance included GLOBAL Chairman John J. Sie, GLOBAL Ambassadors Sophia Whitten, Charlotte (Charley) Fonfara-LaRose, and Abby Ashbrook; Directors from the NIH Drs. Jay Bhattacharya, Richard Hodes, Gary Gibbons, Alison Cernich, Walter Koroshetz, Michael Chiang, Monica Webb Hooper, Anna Mazzucco and Annica Wayman; Jim Hudson and Heather Sachs from the National Down Syndrome Congress, and executives from Black Down Syndrome Association, Down Syndrome Guild of Dallas, Virginia Down Syndrome Association, 321 Foundation, Down Syndrome Association of Jacksonville, and Down Syndrome Association of Delaware.

To learn more about GLOBAL, visit www.globaldownsyndrome.org.

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About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 110 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, LinkedIn, and YouTube.

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Bipartisan Legislation for Transformative NIH Down Syndrome Research – A Legacy for GLOBAL Ambassador DeOndra Dixon

DENVER – May 22, 2025 — Sens. John Hickenlooper (D-CO) and Jerry Moran (R-KS) and Reps. Diana DeGette (D-CO) and Richard Hudson (R-NC) have reintroduced the DeOndra Dixon INCLUDE Project Act (S.1838/H.R. 3491). Joining as original cosponsors are Sens. Cory Booker (D-NJ) and Markwayne Mullin (R-OK) and Reps. Tom Cole (R-OK), Rosa DeLauro (D-CT), Pete Stauber (R-MN), and Eleanor Holmes Norton (D-DC).

The bill provides statutory authority for the trans-NIH INCLUDE “Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome” Project. As a result of Global Down Syndrome Foundation’s advocacy, the INCLUDE Project was established in 2018 to investigate the co-occurring conditions that affect those with Down syndrome (e.g. Alzheimer’s, autoimmune disorders) and their quality-of-life needs.  It has focused on targeted research on chromosome 21, assembling a large study population of individuals with Down syndrome, and conducting clinical trials that include those with Down syndrome. 

“Hundreds of thousands of Americans live with Down syndrome, and yet its research has been underfunded for decades,” says Senator Hickenlooper. “This bill is named for my friend DeOndra Dixon, who lived a full, vibrant life and wanted the same for all people living with Down syndrome. We are determined to get this bill across the finish line for her, and for every American who will benefit from research on many different health conditions.” 

“Research, supported by the NIH, has helped improve and extend the lives of individuals with Down syndrome, but there is still more to learn,” says Senator Moran. “This legislation will invest in scientific studies on Down syndrome to help members of the Down syndrome community and their families find answers and solutions for the health challenges they face.”

“Down syndrome, the leading cause of developmental delay in the U.S. and worldwide, was the least funded genetic syndrome at the NIH for decades,” says Representative Diana DeGette.  “We have made tremendous strides in new federal investments in Down syndrome research to understand why those living with Down syndrome are so at risk for some diseases, such as Alzheimer’s and autoimmune disorders, and protected from other diseases such as solid tumor cancers. Passage of the DeOndra Dixon INCLUDE Project Act will ensure these successful trans-NIH initiatives continue to make significant scientific advances to improve and extend the lives of people with Down syndrome and millions of other Americans as well.”

“People with Down syndrome enrich our world in many unique ways,” says Representative Hudson. “The DeOndra Dixon INCLUDE Act ensures people with Down syndrome are valued, respected members of society and that NIH is supporting their health, enabling them to live their lives to their full potential – with no barriers or bias or obstacles standing in their way. I am honored to continue and grow research efforts so people with Down syndrome have the long and healthy lives they deserve.”

The legislation is named in honor of the life and legacy of DeOndra Dixon, beloved Global Down Syndrome Foundation (GLOBAL) Ambassador and sister of Academy Award-winning and Grammy Award-winning talent Jamie Foxx. DeOndra was an inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award and she traveled the world promoting awareness and advocacy. She was a talented dancer and musician who performed with her brother at the Grammy Awards.

“We are forever grateful to GLOBAL for creating such purpose for our little sister DeOndra,” says Jamie Foxx. “My sister Deidra and I are so proud of the big difference she made through her advocacy in DC, and now with this bill she will continue to make a difference. There isn’t a day that goes by that we don’t miss her, but today I know she’s dancing up in heaven because this legislation is named after her and will help millions of people with Down syndrome.”

“GLOBAL is truly overwhelmed by the strong bipartisan support for the DeOndra Dixon INCLUDE Project Act that will formally authorize the INCLUDE Project at the NIH and make the project more permanent,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “We couldn’t have come this far without the leadership of HELP Committee leaders Sens. John Hickenlooper and Markwayne Mullin, House Energy & Commerce leaders Reps. Richard Hudson and Diana DeGette, and our appropriation champions Reps. Tom Cole, Rosa DeLauro and Robert Aderholt. We also owe so much to Dr. Joaquin Espinosa for bringing scientific breakthroughs to the table, to Ambassador DeOndra’s beautiful family, and to our original congressional champions, especially those who have children with Down syndrome such as Reps Cathy McMorris Rodgers, Pete Stauber and Eleanor Holmes Norton.”

GLOBAL had advocated for a trans-National Institutes of Health (NIH) Down syndrome research program since its inception in 2009. In 2017, three GLOBAL leaders , including board member, Frank Stephens, testified at the hallmark House Appropriations Labor, Health and Human Services subcommittee hearing on Down syndrome research. Frank’s testimony went viral that evening with 1 million views and today has over 200 million views. Shortly after the hearing, GLOBAL’s long-time advocacy goal was fulfilled, and the NIH established the INCLUDE Project.

Since the INCLUDE Project was established in 2018, the program has funded 389 unique awards within 21 of the 27 NIH institutes investing $434M. Thirteen of these institutes did not participate in Down syndrome research prior to this program. The INCLUDE Project has also supported the development of the clinical trial infrastructure. Prior to the program, there were only two NIH clinical trials focused on people with Down syndrome. In just seven years, the INCLUDE Project has funded fourteen promising clinical trials with possible immediate or short-term impact for people with Down syndrome.

“DSA of Central Oklahoma is a long-time supporter of the Global Down Syndrome Foundation, and their government advocacy work that resulted in the establishment of the trans-NIH Down syndrome research program called the INCLUDE Project,” says Sarah Soell, Executive Director of the Down Syndrome Association of Central Oklahoma. “We know first-hand from our families that the increased research funding is making a difference. We see real progress in the treatment of the many co-occurring conditions that we see in people with Down syndrome, including autoimmune conditions, regression disorder, sleep apnea, Alzheimer’s and more. Given the nearly twenty years of Down syndrome being the least funded genetic condition at the NIH prior to the INCLUDE Project, it is so important to pass this bill!”

Formally authorizing the INCLUDE Project beyond an annual congressional directive will ensure that people with Down syndrome are not left behind when it comes to participating in clinical trials; it will improve health outcomes and improve their quality of life; and it will send a strong message that our society values and wants to invest in the future of our children and adults with Down syndrome and their families.

GLOBAL urges advocates to contact Congress to urge them to co-sponsor and support passage of the DeOndra Dixon INCLUDE Project Act: https://www.globaldownsyndrome.org/deondra-dixon-include-project-act/

GLOBAL Affiliate, the Crnic Institute for Down Syndrome, has multiple clinical trials specifically designed for persons with Down syndrome testing new therapies for Alzheimer’s disease in Down Syndrome, Down Syndrome Regression Disorder, and autoimmune conditions.

To read about the impactful research that the INCLUDE Project has funded visit the NIH Down Syndrome Coordinating Center Website at: https://includedcc.org/.

###

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,700 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. 

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World^TM . GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome). 

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Freedom of Speech & Protecting Vulnerable Communities Are Not Mutually Exclusive   

CINCINNATI, DENVER, HOFFMAN ESTATES, Ill., WASHINGTON, D.C., WOBURN, Mass. (May 1, 2025) – Today, the United Coalition for Down Syndrome is speaking out against the alarming resurgence of the “R-word” in public discourse. At the same time, we are calling on individuals and organizations to take a stand, by pledging not to use this harmful slur.

Numerous media outlets have reported a sharp increase in the word’s usage across television, radio, podcasts, social media, and the internet. A recent study examining social media in January 2025 revealed a staggering 207.5% rise in posts containing the R-word on X alone – totaling 312,642 instances.

Shockingly, there are some who believe its use is a “great cultural victory.”

We firmly reject that notion. The R-word is not a cultural triumph – it is a tool of marginalization. It dehumanizes people with Down syndrome and other disabilities and can contribute to mental distress and long-lasting harm. This type of language is rooted in the same prejudice that, for decades, led to people with Down syndrome and other intellectual and developmental disabilities being placed in cruel and inhumane institutions such as Willowbrook, NY –  a practice that continued well into the early 1990s.

“Being compared to people like me should be considered a badge of honor. No one overcomes more than we do and still loves life so much. And yet here we are in 2025 with some of the most influential people in our country, like naughty little boys with their first curse word, reviving the use of the R-word just to gain attention and, meanwhile, opening the floodgates to its popular use. I appreciate the United Coalition for Down Syndrome standing up for what is right, and I hope this goes a long way in educating people that using the R-word is like a little dagger jabbing at our dignity as human beings,” says Frank Stephens, a Special Olympics Global Messenger associated with the “End the Word” campaign, and Global Down Syndrome Foundation board member.

The United Coalition for Down Syndrome embraces and is grateful for the freedom of speech that defines our nation. But using that freedom to perpetuate a derogatory term aimed at one of society’s most vulnerable populations is not bold – it’s cowardly. Not everyone with an intellectual and developmental disability can push back against such slurs or exact any meaningful social cost on those who use them.

We believe that the overwhelming majority of Americans want to do the right thing. The United Coalition for Down Syndrome urges everyone to make the conscious choice to leave this word behind. In exercising our freedom of speech, let’s also choose compassion, dignity, and respect. These are lives worth celebrating – and our language should reflect that truth.

Related Resources:

GiGi’s Playhouse Down Syndrome Achievement Centers: Community Page; GiGi’s Message on the R Word  
Global Down Syndrome Foundation: Words Can Hurt

National Down Syndrome Congress: NDSC condemns the use of the “R-word” and calls for respectful language

National Down Syndrome Society: Preferred Language Guide; R-Word TikTok Video

Special Olympics: Why the R-word is the R-Slur; Increase Usage of the R-word on Social Media

About the United Coalition for Down Syndrome
The United Coalition for Down Syndrome (UCDS) is a coalition of national Down syndrome organizations seeking to facilitate collective action and speak with a unified voice concerning critical issues that impact the Down syndrome community in the United States. UCDS is comprised of the following national organizations: GiGi’s Playhouse Achievement Centers, Global Down Syndrome Foundation, LuMind IDSC, National Down Syndrome Congress, and National Down Syndrome Society. All of our organizations remain steadfastly non-partisan, focusing solely on the well-being of individuals with Down syndrome and their families.

GLOBAL Members Taking a Stand:

Contacts:

Anca Elena Call                                                                            
Global Down Syndrome Foundation        
acall@globaldownsyndrome.org                                          
C: (720) 320-3832           

Jim Hudson                                                                
National Down Syndrome Congress
jim@ndsccenter.org
C: (513) 400-6563

Michelle Sagan
National Down Syndrome Society
msagan@ndss.org
C: (301) 728-0447

Kris Meadows
GiGi’s Playhouse
Kmeadows@gigisplayhouse.org
C: (815) 739-7656

Kate O’Neill
LuMind IDSC
koneill@lumindidsc.org
C: (508) 344-4932

Event Honors Rep. DeGette, Rep. Aderholt, and Tucker Emry & Features Chuck Todd, and Performers with Down Syndrome

WHAT

The Global Down Syndrome Foundation (GLOBAL) is honoring Congresswoman Diana DeGette (D-CO) and Congressman Robert Aderholt (R-AL), who will receive GLOBAL’s highest honor,the Quincy Jones Exceptional Advocacy Awards, for their work in support for those with Down syndrome, during its annual AcceptAbility Gala. GLOBAL Ambassador Tucker Emry, an actor and self-advocate from Baltimore, will also be recognized. The gala is an inspiring fundraiser that features a dance performance by Annapolis’ Robert Wallop and other DC-area dancers from the inclusive dance team, RhythmXpress, as well as a performance by Multiplatinum Artist and Actor Phillip Phillips. This year’s gala is honoring the memory of the beloved and long-time GLOBAL supporter, Cornelia Stephens.

WHEN

Wednesday, May 21, 2025; 6:00 p.m. – Reception/Red Carpet; 7:00 p.m. – Dinner, live auction and special performances by Phillip Phillips and local talent with Down syndrome and other intellectual disabilities.

WHO

• Honoree Cong. Robert Aderholt (R-AL)
• Honoree Cong. Diana DeGette (D-CO)
• 2025 GLOBAL Ambassador Tucker Emry, Actor and Self-Advocate from Baltimore
• Congressional Host Committee Members: Sen. Cory Booker, Cong. Katherine Clark, Cong. Tom Cole, Sen. Steve Daines, Cong. Rosa DeLauro, Cong. Lois Frankel, Sen. John Hickenlooper, Cong. Richard Hudson (presenting), Sen. Jerry Moran, Cong. Eleanor Holmes Norton, Cong. Pete Sessions, Cong. Pete Stauber
• Phillip Phillips, Multiplatinum Artist and Actor
• Chuck Todd, NBC News’ chief political analyst, Event Co-Emcee
• Autria Godfrey, former ABC7 News anchor, Event Co-Emcee
• Robert Wallop, Soloist Dancer and Self-Advocate, Annapolis, MD
• RhythmXpress, Integrated Dance Team, Annapolis, MD
• Michelle Sie Whitten, President & CEO, Global Down Syndrome Foundation
• Frank Stephens, GLOBAL Board Member, GLOBAL Ambassador, Self-Advocate and Actor, Fairfax, VA
• David Egan, Quincy Jones Awardee, Gala Event Committee, Self-Advocate and Author, Vienna, VA
• Natalie Farr Harrison, SVP, Government Relations, Avoq, and Guy Harrison, Partner, OnMessage, of Alexandria, VA, Gala Board Co-Chairs

WHERE

Marriott Marquis Washington, DC
901 Massachusetts Ave, NW
Washington, DC 20001

WHY

GLOBAL’s annual AcceptAbility Gala brings together policymakers from both sides of the aisle, key scientists from NIH, philanthropists, corporate sponsors, and the Down syndrome community. Down syndrome is the most frequent chromosomal condition, affecting over 400,000 Americans. With GLOBAL’s leadership bringing together multiple stakeholders, the NIH Down syndrome research and medical care budget has increased by $418 million over the last seven years. The AcceptAbility Gala is an opportunity to celebrate major new federal research funding increases after years of being one of the least funded genetic conditions and to educate Congress and the community about the transformative DeOndra Dixon INCLUDE Project Act of 2024 that will elongate life and improve health outcomes for people with Down syndrome.

HOW

To cover the event or receive photos, contact Shawn Flaherty at 703-554-3609. For more information, visit www.globaldownsyndrome.org. 

Global Down Syndrome Foundation – Policy Statement

DENVER (May 6, 2025) – Today the Global Down Syndrome Foundation published its Policy Statement on how potential changes to Medicaid can affect individuals with Down syndrome and their families and issued a call to action.

Congress and the Administration are considering changes to the Medicaid program, a shared federal-state program that provides health insurance coverage, medical care and services for low-income Americans, as well as Americans with disabilities, including those with Down syndrome. While income eligibility limits vary by state, individuals with incomes from $967/month to $2,901/month can qualify for Medicaid coverage and services.   

As policymakers debate and consider changes to this vital program, the Global Down Syndrome Foundation (GLOBAL) urges Congress to safeguard and strengthen the Medicaid program, recognizing its indispensable role in supporting individuals with Down syndrome and others with intellectual and developmental disabilities. 

Background

Down syndrome is a chromosomal condition caused by having an extra copy of chromosome 21.  It is the most common chromosomal condition diagnosed in the U.S., affecting about 6,000 babies born every year. Americans with Down syndrome often have complex medical needs. While it is important to note that people with Down syndrome are genetically protected from certain diseases such as solid tumor cancers and certain types of heart attack and stroke, unfortunately they are also more at risk for other diseases. For example, they are at a higher risk for diseases such as Alzheimer’s disease, leukemias, autoimmune diseases such as hypothyroidism and alopecia areata, congenital heart disease, and sleep apnea.

Medicaid is the primary source of health coverage for individuals with Down syndrome, providing critical medical, long-term services, and home and community-based support. A 2023 study published in JAMA Health Forum, Medicaid Enrollment and Service Use Among Adults With Down Syndrome, which studied enrollment patterns, identified 123,024 with Down syndrome, over 25% of the Down syndrome population, enrolled in Medicaid between 2011 and 2019. While Medicaid coverage eligibility is based on household income relative to the federal poverty level, people with disabilities such as Down syndrome can qualify for Medicaid coverage through the Social Security Administration’s Supplemental Security Income (SSI) benefits program. To qualify, individuals must have a medically determinable physical or mental impairment that prevents substantial gainful activity and is expected to last at least 12 months or result in death, and meet certain monthly income and asset limits. 

The Importance of Medicaid Coverage

Medicaid provides coverage that supports the unique needs and health challenges facing people with Down syndrome, including: 

• Home and Community-Based Services (HCBS): Supports independent living and prevents unnecessary institutionalization.
• Specialty Medical Care: Covers treatment for co-occurring conditions common among people with Down syndrome, including congenital heart defects, thyroid disease, hearing loss, vision impairment, sleep apnea, gastrointestinal conditions, and autoimmune disorders.
• Therapy Services: Funds physical, occupational, and speech therapies that promote functional independence and quality of life.
• Personal Care Support: Assists with activities of daily living, including bathing, dressing, and eating.
• Behavioral Health Services: Supports mental health care and behavioral interventions for individuals with intellectual and developmental disabilities.
• Medical Equipment and Supplies: Provides access to durable medical equipment like hearing aids, orthotics, wheelchairs, and communication devices.

A Call To Action

GLOBAL supports efforts to improve the Medicaid program. However, we have deep concerns regarding proposals under consideration to significantly reduce federal funding, impose block grants that would diminish funding, and enact onerous eligibility restrictions that would result in people with Down syndrome being denied coverage or reducing current coverage for essential services.  Protecting Medicaid is not just fiscally responsible — it is a moral obligation to ensure that individuals with Down syndrome and others with IDD can lead full, meaningful lives with the care and support they deserve. GLOBAL urges the Congress and Administration to protect Medicaid to ensure that people with Down syndrome and other vulnerable populations continue to have access to quality and affordable healthcare services under Medicaid.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 110 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, and LinkedIn.

Contact:                                  
Anca Elena Call                                  
acall@globaldownsyndrome.org                                                 
C: (720) 320-3832         

Victoria Esposito
Victoria.consultant@globaldownsyndrome.org
C: (714)728-0663