GLOBAL’s WDSD Campaign Aims to Raise $25,000 for Life-Saving & Transformative Research & Medical Care

DONATE between now and MARCH 31st to help us reach our goal!

DENVER, SYDNEY, KAMPALA, NYC, GENOVA, March 20, 2025 – Today, the Global Down Syndrome Foundation (GLOBAL) announced their World Down Syndrome Day celebrations in Denver, New York City, Australia, Uganda, and Italy. The foundation, which provides evidence-based, free medical care guidelines for children and adults with Down syndrome, aims to raise $25,000 for their World Down Syndrome Campaign. One hundred percent of the proceeds go to life-saving and transformative research and medical care for patients with Down syndrome from 33 states and 10 countries.

As World Down Syndrome Day approaches on March 21^st (signifying that people with Down syndrome have 3 copies of chromosome 21), GLOBAL is gearing up for several celebrations and impactful initiatives around the world:

Denver, USA – World Down Syndrome Day EPIC Dance Party

• Over 200 people and local celebrities have already signed up for GLOBAL’s Friday, March 21^st event at the fabulous Cherry Creek Shopping Center with additional sponsorships from Kona Grill, Developmental Pathways, and Ricki & Dave Rest; Register and donate today HERE
• Thanks to GLOBAL’s amazing friends at Kroenke Sports Charities who are lighting up Ball Arena blue & yellow in the morning

Sydney, Australia – Down Syndrome Symposium Australia

• Featuring GLOBAL/Crnic Institute Director Dr. Joaquín Espinosa and GLOBAL Adult Guideline Author Dr. Dennis McGuire
• Supported by GLOBAL, Down Syndrome Institute, Siblings Australia, The Hon. Dr. Mike Freelander MP and more
• Saturday March 22^nd – Sunday March 23^rd at Wesley Conference Centre, 220 Pitt Street, Syndey CBP 10:00 AM – 5:00 PM – FREE & Open to the Public!

New York City, USA – United Nations Conference

• Featuring GLOBAL/Crnic Institute Researcher Deborah Fidler, PhD, Professor of Human Development and Family Studies at Colorado State University; Other speakers include Tonye Faloughi-Ekezie, GiGi Gianni and Nancy Gianni, Misty Coy Snyder
• Thursday, March 20^th 11:30 – 12:45 PM, General Assembly Building Conference Room 3 – FREE & Open to the Public

Genoa, Italy – “No Decision Without US” CoorDown Video

• Featuring GLOBAL International Spokesperson Caterina Scorsone & talented Self-Advocates
• GLOBAL is proud to support this important video created by CoorDown in Italy

Denver, USA –Important World Down Syndrome Day Video from GLOBAL

• Featuring Self-Advocates from Around the World

Kampala, Uganda – World Down Syndrome Day Awareness Events

• Featuring an Awareness March in the city, an exhibit for people with DS to share their skills (dance, pottery, baking, arts), and a Resource fair to support families
• GLOBAL and the Global Livingston Institute are working with local Down syndrome and intellectual disability NGOs to organize these fun and inspiring events

“We are so honored to be a part of World Down Syndrome Day initiatives in Denver, NYC, Australia, Italy, and Uganda this year,” says GLOBAL President & CEO Michelle Sie Whitten. “We are now actively working in 10 countries translating and distributing our Prenatal & Newborn Pamphlet, GLOBAL Adult Guideline, and other important resources at no cost to hundreds of thousands of people with Down syndrome and their families. We could not do this without our wonderful in-country collaborators, the leaders on our GLOBAL Membership Advisory Board, and our affiliates, families and champions. Everyone at GLOBAL works so hard, and  it is lovely to have a day where everyone can just celebrate our progress and the awesome people with Down syndrome we serve!”

World Down Syndrome Day falls on March 21^st or “3-21” signifying the fact that people with Down syndrome are born with 3 (three) copies of chromosome 21 instead of 2 (two). World Down Syndrome Day was promulgated by the United Nations in 2012 and is celebrated in 190 countries. 

To learn more about the Global Down Syndrome Foundation and World Down Syndrome Day, visit www.globaldownsyndrome.org/world-down-syndrome-day-month.

###

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 & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome, YouTube: @GlobaldownsyndromeOrg, LinkedIn: @global-down-syndrome-foundation). 

Down Syndrome Alabama, established in 1987, is the leading champion in its state for individuals with Down syndrome. Recent initiatives include their CHAMPS program, providing social and education opportunities to post-secondary students,  their EDGE UP learning program for schoolchildren, and their HEADS UP program, which teaches meaningful advocacy to elementary students.

GLOBAL Vice President – Strategic Alliances, David Tolleson, met with Melissa “Missy” Haughery, M.S., Executive Director of Down Syndrome Alabama, to learn more about the organization, its recent initiatives, and more.

DAVID: Tell us a bit about yourself and how you got involved with Down Syndrome Alabama?

MISSY: I am an educator. I was a 12th grade English teacher for 26 years. My goal was to become a middle school assistant principal. However, when I became pregnant with twins – one of whom has Down syndrome – and I realized that I would have 3 children under the age of 3, I realized that I may have to push my professional goals back a bit. As time went on, I realized that being at basketball games until 8 pm probably wasn’t the wisest choice for my family, so as I neared the 25-year mark, I decided it was time to come out of the classroom. I loved teaching, but it was time for a change. The DSA Executive Director job came open and my husband encouraged me to apply. I didn’t want to, because I thought it should be someone outside of the Down syndrome community, because I thought it might be hard for folks to distinguish between my professional life and my personal life as a mom. In late summer of 2022, I submitted my resume, and I started in March of 2023. My master’s degree is in educational leadership, so instead of leading a school, I’m leading an organization that educates people.

DAVID: Tell us a bit more about Down Syndrome Alabama.

MISSY: Down Syndrome Alabama has been around since the late 70’s/early 80’s when it was formed as a parent advocacy group. Parents felt like if they came together, they’d have a stronger voice. They incorporated under the name PADS – Parent Advocacy for Down Syndrome. It was a parent-run, mom-and-pop organization that grew very organically, but very quickly. In 2012, they changed the name to Down Syndrome Alabama, and it became a shift from mom-and-pop to a more professionally run and led organization. As was the case with many organizations, 2020 led to quite a bit of change with a new Executive Director who implemented a lot of policies and procedures to continue the growth and expansion into some satellites and that’s where we are today.

DAVID: Last year, Down Syndrome Alabama received DSAIA’s “Affiliate of the Year” Award. Tell us a bit about that recognition and what it means to you.

MISSY: That recognition was amazing, and we weren’t expecting it at all, especially since I’d only be in the role for a year. One of the main things we talked about was a program that we’d introduced where we partnered with an artist named Carolyn Lewis. She created a piece of art named an empowerment bird. It came about because we have our new parent bag with things for the baby, but I thought we needed something for the parent that says, “Hey, you’ve got this. It may be tough, and it may not be the road you planned, but you’ve got this.” We were able to create smaller replicas for our parents. When I met with the artist, the piece became more special, because she was inspired to become an artist by a boy she used to babysit who had Down syndrome. We had the boy, who is now an adult, at the unveiling. It was a surprise for him and his family, as the artist explained how he inspired her work.

We have our new parent outreach and our CHAMPS program, which provides post-secondary adults with social and educational opportunities 1 to 2 times per month. For example, we have a self-defense class taught by the Hoover, AL, Police Department, because what could be more empowering than to feel safe and confident? As we are growing in society and things like Ubers are going to be used more frequently by people with Down syndrome, what are those safety measures they need to be aware of in those situations?

We also have a program that is funded through a GLOBAL Education Award, which is our LACE UP program. It is a “Couch to 5k” running program for adults. We’re hoping to expand that to younger kids and caregivers, because having everyone in the family involved is important for long-term adoption of an exercise program by self-advocates. We want to get them off the couch and moving however they can, whether that’s walking or running. We’re proud to have Daniel Chaplin, a self-advocate who has run half-marathons in all 50 states, as a part of our group. Not everyone is as athletic as Daniel, but if we can get everyone a little closer to his level – even if they’re not running marathons – wouldn’t that be great?

We also have an educational program to help schoolchildren with Down syndrome meet the criteria they’ll need to participate in a post-secondary program like Auburn’s Eagles Program, ClemsonLIFE, or the Access Program at Mississippi State. Additionally, we have our HEADS UP program, where we go into elementary classrooms or to Cub Scout or Girl Scout groups to teach younger generations about how to be an advocate. HEADS UP actually stands for “Helping Everyone Advocate for Down Syndrome”. We teach them at a level appropriate for their age, because everyone can advocate, and then leave them with a book for their classroom and a certificate and a bow for their door.
My personal philosophy for our organization is “see us, know us, love us,” because I feel the more we are seen in society, the more people will get to know us, and then they’ll come to love us. I try very hard to make sure that when we have programs or activities, we do them in public places.

DAVID: In addition to your many great programs, you also have a very unique fundraiser!

MISSY: Yes! We partner with Clyde May Whiskey for a bourbon and spirit tasting event. Clyde was a bootlegger who went to prison for making and selling alcohol illegally, but he also had a daughter with Down syndrome, and he raised her in his home with his other children at a time when society believed it best to do otherwise. So to the Down syndrome community, Clyde May was a trailblazer. Clyde’s grandson comes to the event, tells stories of the label and of his grandfather’s love for his daughter, Debbie. This year, we elevated the event to include a guest bartender, Wilson Taylor, a young man who has Down syndrome, because bartending is empowering! The story gets even better because the CEO of the Clyde May brand also has a daughter with Down syndrome. Pretty cool.

DAVID: Cool, indeed. As is the fact that you have a new Down syndrome clinic forming in Birmingham! How is Down Syndrome Alabama supporting that effort?

MISSY: The plan is for it to be a lifespan program but they’ve started with pediatrics earlier this year and already have patients scheduled through June, which shows the level of need. Patients can see a pediatrician, audiologist, psychologist, and speech therapist, as well as a social worker who can help advocate for appropriate supports in the school setting. They’re working on getting an OT, cardiologist, and endocrinologist. The clinic is through the University of Alabama – Birmingham (UAB). My hope is that from here, UAB will jump on board with Down syndrome research. We support their work, and they will be giving out our new parent bags, which is great, because the parents might not know to call us. The clinic will also be offering a family summer camp weekend that we’ll play a role in. It will be a great opportunity for families to connect with one another – it’s huge to meet others who are in your shoes. As a parent, I’ve always thought it’s important for my children without Down syndrome to meet other siblings, because when I’m long gone, they’ll need a support system.

DAVID: Tell us about your experience with GLOBAL’s DeOndra Dixon fly-in.

MISSY: It was an experience that was educational and one that I never thought I would do. When we arrived Tuesday and met with the GLOBAL staff, it was empowering and taught me so much about what to do and the purpose of our visit, that it gave me the confidence that I needed the next day to go meet with our Senators. The Davis family went with us and Grace, who has Down syndrome, is a recent graduate from the Auburn Eagles program. I asked Grace and her family to come, because of her connection to Auburn, where Senator Tommy Tuberville used to be head football coach. Coincidentally, Grace’s mom grew up dancing with our other senator, Katie Britt, which was a great connection. They also felt so empowered after our meetings with the senators.
GLOBAL’s Congressional briefing was amazing – standing room only! I was sitting next to a staff member from Minnesota who said, “I heard Jamie Foxx would be here talking about Down syndrome and what could be better than Jamie Foxx and Down syndrome?!” Then, as we were leaving, we saw JD Vance and I thought, “Oh my gosh, he’s the Vice President-elect!” Grace did an amazing job making the Auburn connection with Senator Tuberville and then spoke eloquently to Senator Britt about herself and her accomplishments, but also spoke about her fears, some of which are medical issues. After Grace finished speaking, Senator Britt looked at her and said, “Grace, I would be honored to co-sponsor this bill for you.” We were so excited! I felt like we flew up to DC, did our job, and it was amazing! It was very validating knowing that we had worked hard and done something right. And, of course, what could be more fun than ending the night with Jamie Foxx singing “Push it” by Salt n Pepa, while everyone was dancing? It was one of those out of body experiences! Nothing I could’ve ever imagined doing!

DAVID: We are grateful that Down Syndrome Alabama is supporting the project to update and expand the GLOBAL Adult Guidelines with a generous multi-year pledge. Why is this project, GLOBAL’s research and medical care work, and our Washington, DC advocacy important to you and the families you serve?

MISSY: One of the biggest calls I get is from people who say, “I need to find a doctor who will see my adult with Down syndrome.” I think that if we’re not able to educate every physician on Down syndrome, we need to at least be able to educate the families to say to their physicians, “here are the Guidelines and I need you to do what’s on the checklist.” To me, that’s just the easier route to ensure better healthcare for people with Down syndrome. Down syndrome is delightful, but it’s the medical issues that can be the hard part. You can’t control health in the same way you can control educational access, for example. The 21st chromosome contains many mysteries. I believe GLOBAL’s work will unlock these mysteries not only for people with Down syndrome, but for all of us.

DAVID: Is there anything else you’d like to share?

MISSY: I feel like we as a community are being seen more and progress is being made, but so much more needs to happen. I’m so proud to be a part of this and I hope that in a few decades, some of the things we celebrate will not need to be celebrated because they’ll be the norm. It’ll be the norm that you have an adult with Down syndrome working for UPS and not a celebration because he’s the only one.

DAVID: Thank you, Missy!

MISSY: Thank you to everyone at GLOBAL! You’re amazing people doing the work you’re doing.

Co-Chairs Natalie Farr Harrison & Guy Harrison Promise a Magical Evening Including Local Dancers with Down Syndrome

DENVER– February 6, 2025 – Today, the Global Down Syndrome Foundation (GLOBAL) announced Multiplatinum Artist and Actor Phillip Phillips and GLOBAL Ambassador and actor Tucker Emry will headline their  annual AcceptAbility Gala at the Marriot Marquis Washington, DC on Wednesday, May 21, 2025. Tickets, Tables and Sponsorships are now available here.

Since releasing his five-times-platinum debut single “Home,” Phillip Phillips has released three chart-topping albums and taken his expansive brand of earthy, guitar-fueled rock to stages across the globe. In 2020, Phillips joined GLOBAL’s Be Beautiful Be Yourself Fashion Show and performed a heartfelt tribute in honor of DeOndra Dixon with a beautiful rendition of “Gone, Gone, Gone.”  Tucker Emry is a role model in the Down syndrome community attending The Harbour School in Maryland and participating in his Young Life youth group and Performing Arts Academy where he is honing his acting skills. He has appeared as Puck in “A Midsummer Night’s Dream” and the White Rabbit in “Alice in Wonderland,” among other roles.

Natalie Farr Harrison and her husband Guy Harrison are long-time AcceptAbility Gala Board Members and are thrilled to Co-Chair this event. “We have so many friends who have children with Down syndrome so GLOBAL’s life-changing research and medical care advocacy is near and dear to our hearts,” says Natalie. “Guy and I have been in DC for over 20 years, and I can honestly say the AcceptAbility Gala is the most inspirational and magical fundraiser we’ve ever attended. We can’t wait for more people to know about it!” Natalie is a Senior Vice President of Government Relations at Avoq. Guy is a Partner at OnMessage Inc.

“I am so grateful to be able to show Members of Congress and our friends at NIH how great my team and I are at dancing!” says Robert Wallop, soloist and member of the RhythmXpress dance team. Robert is the three-time USA Dance National Champion for Pro/Am rhythm and smooth at the bronze level.  In 2017, he was featured on the hit show So You Think You Can Dance.

GLOBAL’s annual AcceptAbility Gala brings together policymakers from both sides of the aisle, key scientists from the National Institutes of Health (NIH), and the Down syndrome community. Each year, the gala recognizes two Members of Congress with their highest honor, the Quincy Jones Exceptional Advocacy Award. Past recipients include Representatives Tom Cole, Rosa DeLauro, Pete Sessions, Eleanor Holmes Norton, Cathy McMorris Rodgers, Katherine Clark, Pete Stauber, Lois Frankel, and Richard Hudson; and Senators John Hickenlooper, Jerry Moran, Steve Daines, and Tom Harkin.

The AcceptAbility Gala Board consists of business and government advocacy leaders as well as leaders in the Down syndrome community. In addition to Natalie and Guy the board includes Jan Adams, Founder & CEO JMA Solutions; John Ashbrook, Founding Partner, Cavalry LLC; Amy Best Weiss, Executive VP, Global Government Affairs, American Express; Kevin Brennan, Principal, Bluebird Strategies; Emilie Eager, Director of Business Development, Julie Parker Communications; David Egan, Quincy Jones Awardee, self-advocate and author, from Vienna, VA; Felicia Emry, Esq., Life Skills Program Coordinator and Client Care Liaison, Heaven on Earth NOW; Erin Book Mullen, Principal, Williams & Jensen, PLLC; Matthew Perin, Head of Government Relations and Regulatory Affairs, Kroger; Cliff Riccio, Senior Vice President & Chief, Government Relations, NCTA; Julie Riccio, Director of Regulatory Affairs and Public Policy, PwC;  Frank Stephens, GLOBAL board member, GLOBAL Ambassador, self-advocate and actor, from Fairfax, VA; Richard Waysdorf, Legal Consultant, Global Down Syndrome Foundation; and Michelle Sie Whitten, President & CEO, Global Down Syndrome Foundation. 

The AcceptAbility Gala supports the Global Down Syndrome Foundation, funding life-changing government advocacy, research, and lifesaving medical care for children and adults with Down syndrome. Down syndrome is the most frequent chromosomal condition, affecting an estimated 400,000 Americans, but it has been one of the least-funded genetic condition by NIH.

With GLOBAL’s leadership bringing together multiple stakeholders, the NIH Down syndrome research and medical care budget has increased by $440 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 that ensures we continue to elongate life and improve health outcomes for people with Down syndrome.

The AcceptAbility Gala starts at 6:00 p.m. with a reception and red carpet followed by dinner, a live auction, and performances by local dancers with Down syndrome and Multiplatinum artist and actor Phillip Phillips. Tickets start at $700 and can be purchased online at www.globaldownsyndrome.org. To cover the event or receive photos or b-roll, contact Shawn Flaherty at 703-554-3609. For more information, visit www.globaldownsyndrome.org.

###

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, and LinkedIn.

Catching up with GLOBAL Ambassador Clarissa Capuano and Actress Midori Francis

From Down Syndrome World Issue 2, 2024

At 17 years old, Clarissa Capuano has it all: amazing friends at Denver’s Cherry Creek High School, a spot on the varsity swim team, and, of course, her Italian-Hispanic family consisting of her mom Carol, her dad Dominic, and older brothers Jessey and Alec (not to mention a slew of adoring aunts and uncles). She’s known for reveling in both sides of her ethnicity and for being feisty, determined, and so, so full of love.

Like many children with Down syndrome, Clarissa has overcome her fair share of health challenges. She is, as a result, very familiar with the Sie Center for Down Syndrome at Children’s Hospital Colorado. Clarissa’s experience there and her relationship with the Sie Center’s Director of Therapies and Senior Physical Therapist, Pat Winders – who helped her learn how to walk – inspired Clarissa to work towards a career in healthcare.

“I want to help people like she does,” Clarissa explains.

While Clarissa wants to grow up and become a doctor, actor Midori Francis, plays a surgical intern on the hit ABC medical drama, Grey’s Anatomy.

Midori met Clarissa at the Be Beautiful Be Yourself Fashion Show, and was quick to offer Clarissa a bounty of sage advice. She started with the classic “Don’t give up!” before adding a needed dose of realism: “But be flexible… allow your passions to grow and change with you. Ask for help and put yourself out there.”

Midori may not have a medical background, but she has a lot in common with her character, Dr. Mika Yasuda.

“We are both five foot two,” Midori jokes, “we are both scrappy. We are both quick to get worked up.”

“But Mika is a doctor, and I am an actor,” she continues, “And I think what doctors have to do is much harder, and that their jobs are much more important.

ADVOCACY & INCLUSION

The comparison is born out of a reverence for healthcare workers, not a snub of her own craft. The responsibility of a platform, especially the responsibility she holds as an Asian actor, is not lost on her.

“We underestimate how much information we get from our screens, from pop-culture, and from the media we consume,” notes Midori.

She adds that, too often, when we don’t have the privilege of interacting with people different from ourselves, our brains automatically develop a narrative about those people based on what little exposure we have.

“It is in our nature as human beings to want to categorize and simplify groups of people,” Midori says, “By diversifying the types of people we see represented on our screens and by having this representation be authentic and real, we open up our minds and hearts to others.”

“It’s important for people with different abilities to see themselves represented in media to show they matter,” adds Clarissa’s Aunt Gia, reflecting on the scarcity of actors with Down syndrome represented throughout her niece’s childhood, “Their accomplishments are important, and I believe it encourages others with disabilities to know that they can accomplish their dreams.”

Midori takes that to work with her every day. It’s a complicated, nuanced, heavy mess— her honest articulation reads like a poem:

“[It feels] Like a burden. Like an honor. Like a responsibility. Like a race that is rigged, and I will never win. Like a great gift. Like a thrill. Like gratitude for all those who came before me and all those to come. Like humility for all the other areas of representation I am ignorant to.”

THE SHOULDERS OF GIANTS

As GLOBAL Ambassador and a Be Beautiful Be Yourself Fashion Show model, Clarissa is often perceived as a guiding star—a peek into the future for younger people with Down syndrome and their parents. She’s often one of GLOBAL’s first calls when a media appearance needs a self-advocate—you might have seen her showing off her runway walk on Colorado & Company. How exciting to think that someone with no connection to Down syndrome could turn on their TV and have any stereotype-fueled perceptions challenged by Clarissa’s confidence, professionalism and never-ending charm.

“My mom says I’m a role model,” Clarissa says proudly. The high school junior has every reason to be confident, and her family has always made sure she knew it.

“My favorite thing about my little sister is her unwavering positivity and infectious laughter,” gushes her brother, Jessey. “And how much love she has to give,” adds her other brother, Alec.

“I absolutely love that Clarissa is always wanting to learn,” says Aunt Gia. “And she is so competitive.” 

She may be petite (just like her friend Midori), but Clarissa stands on the shoulders of giants. Imagine how many people didn’t know that individuals with Down syndrome could be actors, let alone stars of Academy Award-nominated films until they saw Zack Gottsagen in The Peanut Butter Falcon. Imagine how many were moved by Frank Stephens’ declaration to Congress that his life IS worth living, because they hadn’t seen a self-advocate stand up for themselves before. All the while, young people like Clarissa are growing up alongside stars like Sofia Sanchez and Madison Tevlin, who are smashing through more and more barriers onscreen every day.

A WORLD OF JOY AND CONNECTION

Midori humbly shares that she wasn’t very familiar with Down syndrome before the Fashion Show, and thus had “a lot of unexamined and undeveloped ideas” about the condition. Gratefully, her Grey’s Anatomy castmate, Caterina Scorsone, was there to open the door. As a GLOBAL Quincy Jones Exceptional Advocacy Awardee and dedicated mother to Pippa, who has Down syndrome, there was no one better to show Midori what she’d been missing.

“I felt like someone opened a door to me and welcomed me into their world filled with really interesting stories and people,” says Midori, “I was invited to the event by the wonderful Caterina Scorsone (my cast mate on Grey’s Anatomy) who has a long relationship with the Foundation. She uses her platform and heart to educate people about Down syndrome and I was so honored to learn.”

Midori also appreciated the lack of self-consciousness in the air and the Be Beautiful Be Yourself catwalk’s unique ability to make fashion so joyful and celebratory. Midori rocked the runway with Alexandra Shankle, a Fashion Show veteran. She fondly remembers Alexandra’s jokester antics and contagious laugh.

“I loved speaking with her,” Midori remembers, “We mostly communicated without words, but I felt like a lot was said. I can remember that interaction better than most interactions I have had in the last year.”

Similarly, Midori’s connection with Clarissa did not disappoint.

“Clarissa was so much FUN!” Midori beams, “She was totally leading our photo shoot with the poses and I just followed along. I loved how confident she was, especially because I don’t remember feeling that confident when I was her age.”

Clarissa has never met a photo op she didn’t love, but she recalls having an especially fun time hamming it up with her new friend Midori.

AUTHENTICITY EMPOWERS OTHERS

Our teen years can be a precarious time for anyone’s self- esteem, and it’s no secret that kids perceived as “different” are often subject to unfair treatment from their peers. Growing up Asian-American in a predominantly Caucasian New Jersey town in the 90’s and early 2000’s, Midori was routinely bullied for her ethnicity.

“It is a terrible feeling to be put down or bullied… to be laughed at or mocked for being who you are,” Midori shares. “But you know what’s a worse feeling, worse than any of that? The feeling like you’re never allowed to be yourself. To that end, the best compliment anyone can ever give me is that they feel like they can be themselves around me. I do not take that lightly as I know what a gift it is to feel like you can be yourself.”

Clarissa couldn’t agree more about the importance of embracing people who are “different.” Her innate drive to stand up for herself and others with disabilities is irrepressible, and the world is better off for it.

Clarissa’s dad, Dominic, has always been proud of his daughter’s instinct to look out for others.

“She is a very caring soul,” he shares, recalling Clarissa’s instinct to always show up for her friend, Ryan, in her school’s Integrated Learning Center. “She cares for him and supports him in class and she’s overall just a great friend.”

With the support of her family, mentors, and friends, Clarissa is breaking barriers and inspiring others to embrace their unique paths. Whether on the runway or pursuing a career in healthcare, Clarissa shows that true confidence comes from being unapologetically yourself. Through her advocacy and self-expression, Clarissa is not only changing the narrative for individuals with Down syndrome but encouraging us all to celebrate our differences and build a more compassionate world.

A sad morning for GLOBAL and the world.

This morning, we woke up to shocking and very sad news that our dear friend, mentor, supporter and champion, music legend Quincy Jones has passed away. Our hearts ache for his family and his loved ones. Quincy lived an enormous life and gave back to this world with all his heart. How lucky were we as a family and as the Down syndrome community to be on the receiving end of that love?

Quincy is iconic for his unparalleled talent – 28 Grammys and 80 nominations, collaborations with the likes of Frank Sinatra and producing legends such as Michael Jackson. But to my family and to our Down syndrome community he was equally known for his love for Sophia and all our children with Down syndrome who he often spoke about with conviction: “These children aren’t broken, they just need a leg up, the chance to reach their God-given potential.”  

Quincy brought magic to GLOBAL and our Be Beautiful Be Yourself Fashion Show. Each year we give our highest honor, the Quincy Jones Exceptional Advocacy Award, and he introduced us to our first recipient – GLOBAL Ambassador DeOndra Dixon and her family, including big brother Jamie Foxx. This year will be bittersweet when we bestow the award upon Woody Harrelson and Sofia Sanchez.

My dear Dad who himself is 88 is heartbroken but in the end, we know he lived a wonderful life, has the most amazing children and friends, and will be forever loved and remembered.

Please join us in sending loving thoughts and prayers for Quincy and for his family.

A message from GLOBAL’s President & CEO, Michelle Sie Whitten

Cable Baby & Role Model

Growing up in the cable TV industry in Colorado (as I remember it) there were several friendly “camps” – the Bob Magness/John Malone camp, the Bill Daniels camp, the Glenn Jones camp, and the Gene Schneider camp to name a few. Being a self-described “cable baby” in the Magness/Malone camp, I was vaguely aware of other families my parents were friends with including Gene Schneider and his kids – Mark, Tina and Carla. Carla especially had the reputation of being one of the nicest people ever, but I didn’t get a chance to really get to know her until I moved back to Colorado with my husband Tom around 2000.

Carla and her equally wonderful and sweet husband Matt visited Tom and me after we told people publicly that our first-born child would have Down syndrome, and again several times after our Sophia was born.

They proudly introduced us to Alexandra who was about five years old at the time and was born with Shprintzen-Goldberg syndrome. There are less than 50 people with the syndrome worldwide – an extremely rare connective-tissue and cranial disorder characterized by craniofacial and skeletal anomalies and intellectual disability that affects developmental motor and communication skills, vision and hearing from birth.

It was clear to Tom and me that despite the multitude of surgeries and challenges Alexandra was facing, she was thoroughly loved and doted on by Carla and Matt and through that love she was able to communicate, be heard, and enjoy what she wanted to do.

While Tom and I may have already made the decision “to keep” Sophia (so embarrassing to think of it that way now), meeting Carla and Matt with Alex helped to confirm we were making the right decision. After all Tom and I loved each other to the moon and back, and our child would be a literal and figurative combination of the best of both of us. Just like our role models Carla and Matt.

Years later, after I started the Global Down Syndrome Foundation, we had 16 people audition for the first Be Beautiful Be Yourself Fashion Show, and we were delighted that Alex was one of the models. Though we had intended to only have 10 we accepted all 16 models who had intellectual and developmental disabilities (IDD).

The original plan was to always have a mix of models with various IDD but by the third year of the fashion show we would have 50 names, all with Down syndrome, sign up within the first 20 minutes. Turns out being a model in our fashion show was one of MANY things Alex loved to do so she became the singular reminder each year that our children and adults with Down syndrome are part of a bigger community of fabulous people who happen to be differently-abled.

A Family & Community Legacy

When Alex’s siblings, Geno and the twins Holly & Kelsey were born, the number of people who adored Alex and also understood the value of diversity in the world grew exponentially. It was clear that Carla and Matt were beyond wonderful parents. Carla and the kids sadly lost Matt to cancer in 2011  but Carla somehow soldiered through with the amazing support of her sister Tina and family locally, her wonderful kids who were growing up to be as kind and giving as her and Matt, and a network of many, many friends from all walks of life.

While Carla was no intellectual slack (she received her BA from Colorado College and her JD from DU Law School), she had a definite love for enjoying life – playing sports, watching sports (especially the Broncos), international travel, colorful clothes, and cocktails were some enjoyments at the top the list! She instilled the love for life and actively participating in all her children, and the fact that Alex was a Girl Scout Brownie, and continues to enjoy Right Step Horseback riding, Dare to Cheer, Dance Athletics Denver, National Sports Center for the Disabled (NSDC) and Adam’s camps, basketball, and baseball is a testament to how Carla ensured her family’s lives are filled with activity and happiness.

One thing that was always striking to me was that Carla always had people helping Alex who genuinely cared about Alex and who understood that she had desires – what color her nail polish was, what outfits to buy or wear, what activities to participate in. And her mischievous nature, which included the act of “stealing” your nose and then throwing it away while giggling, was always encouraged.

In addition, Geno, Holly and Kelsey were always there for Alex and volunteering in many of Alex’s activities. It was clear they felt infinitely comfortable with our Sophia and anyone who was differently-abled. Their gregarious natures meant loads of friends in and out of the Shankle household who also became friends with Alex and expanded their circles of diversity. Watching Carla and her family thrive was inspiring and sometimes unbelievable as she always made it look so seamless.

Tragically, Carla passed away last month at the age of 62 with her loving family by her side. It was no surprise that it was standing room only at Carla’s funeral or that everyone was asked to wear bright colors or that her preferred photo was with a drink and at a Broncos game! The speeches had us laughing more than crying and left us feeling that Carla had left a legacy for her four beautiful children and extended family as well as for our disability community where she was a fierce advocate for special needs rights, health and education.

Our hearts go out to Carla’s children. It is hard to understand how the world keeps going after someone as vibrant as Carla leaves us. At her funeral we were given consolation in that Carla, Matt, her parents and other loved ones will be united, but we will miss her deeply.

We are very moved that Carla and her family listed the Global Down Syndrome Foundation as one of the non-profit organizations that friends and families can donate to in honor of Carla’s life. We will work hard to honor the memory and legacy of Carla Gene Shankle and to make sure that Alex will always be a part of our GLOBAL family.

Carla Shankle Obituary.

GLOBAL is thrilled to partner with Jack’s Basket to gift FREE one-year GLOBAL memberships to new parents who recently received a prenatal or postnatal Down syndrome diagnosis. Thanks to Jack’s Basket’s extensive distribution network, thousands of parents will enjoy newfound access to research and medical care GLOBAL Webinars and the award-winning Down Syndrome World magazine.

“We are grateful for the generous gift of a one-year GLOBAL membership to our basket recipients,” says Jack’s Basket Founder & CEO Carissa Carroll, M.Ed., “We hope our new and expecting families will get connected and experience the incredible education, research, and resources GLOBAL provides. We are thankful for GLOBAL’s support of our mission and believe our partnership aligns with our shared goals of ensuring that individuals with Down syndrome, their families, and providers have access to resources from the timing of diagnosis.”

 Since its inception in 2014, Jack’s Basket has sent free celebratory gift baskets to over 8,800 babies born with Down syndrome across all 50 states and 46 countries. Each Jack’s Basket contains baby gifts, the contact information of a parent raising a child with Down syndrome, and a collection of books and resources. Among these resources is the Prenatal & Newborn Down Syndrome Information Pamphlet created by GLOBAL in collaboration with The National Down Syndrome Congress and National Down Syndrome Society, which has been included in all Jack’s Baskets since 2023.

“Jack’s Basket is changing the diagnosis experience for parents around the country and the world, by providing a warm welcome – and vital information – to new parents,” says GLOBAL Vice President of Strategic Alliances David Tolleson, “We are very grateful to our friends at Jack’s Basket for providing our Prenatal & Newborn Information Pamphlet, as well as the opportunity to accept a one-year complimentary GLOBAL Membership, in their baskets!”

GLOBAL’s quarterly hour-long webinars cover important topics in Down syndrome research and medical care such as “How to Manage Swallowing Issues in Children with Down Syndrome” and “Sleep Apnea Across the Lifespan.” In addition to presenting on their area of focus, experts answer every question posed by webinar viewers in real time and/or in the weeks following. While presentation slides are available to the public, videos of new and archived webinars are a benefit for GLOBAL Members.

Down Syndrome World™ magazine has received 17 prestigious national awards for excellence in healthcare reporting, including gold, silver and bronze Aster and Healthcare Advertising Awards. The magazine features human interest stories, and features on research, medical care, and movers and shakers from politics to entertainment to non-profits. Keep an eye out for the Scholastic-style Fun Search towards the end of every issue!

Have you or a loved one recently received a Down syndrome diagnosis? Request a complimentary Jack’s Basket full of baby gifts and important resources, including the Prenatal & Newborn Down Syndrome Information Pamphlet, today!