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 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.

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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, 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!

We are honored to share that GLOBAL was selected as the top winner at the CEO Success Community Playing for Charity Corporate Night during the WBENC National Tradeshow in Denver in March 2024. This is the largest conference for women-owned businesses, connecting them with Fortune 500 companies through seminars and special events. 

“We selected GLOBAL as one of our three charity choices based on your outstanding work and in honor of our Tradeshow Booth Corporate Sponsor Kristin Malek, CDW, and my Aunt Diane, who had Down syndrome,” said Marianne Ellis, Co-Founder & CEO of CEO Success Community.  

The John Denver team’s exceptional music performance in Playing for Charity earned them the highest points, leading to their selection of GLOBAL as their charity of choice. Marianne Ellis, CEO/Co-Founder of CEO Success Community, shared a deeply personal connection, reflecting on Michelle’s story of her daughter Sophia and recalling her Aunt Diane’s own journey with Down syndrome.