GREY’S ANATOMY STAR CATERINA SCORSONE AND SPANISH MODEL MARIÁN ÁVILA TO RECEIVE GLOBAL’S PRESTIGIOUS “QUINCY JONES AWARDS”
August 26th, 2020 by Global Down Syndrome Foundation
GLOBAL’s Virtual Be Beautiful Be Yourself Fashion Show attracts an impressive roster of celebrities with a NEW DATE – Saturday, November 14, 2020
Press Contacts:
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
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DENVER, CO August 26, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced two powerful women who will receive this year’s Quincy Jones Exceptional Advocacy Awards: Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila. Celebrities are showing up in full force to support GLOBAL and honor the accomplished awardees.
The awards will be presented during GLOBAL’s annual Be Beautiful Be Yourself Fashion Show, the largest fundraiser for Down syndrome in the world, having raised over $20 million for life-changing research and medical care. Due to COVID-19 and restrictions on in-person gatherings, the event will be held virtually with a new date: Saturday, November 14, 2020.
Caterina Scorsone has starred in numerous television and film roles, portraying powerfully complex characters that have captured the hearts of audiences around the world. She is most well-known for playing the reckless, yet compelling “Dr. Amelia Shepherd” on ABC’s Grey’s Anatomy. Scorsone has three beautiful children including her three-year-old, Pippa, who was born with Down syndrome. Since the birth of Pippa, Scorsone has been a consistent supporter of GLOBAL’s work. For the last three years, Scorsone has used her formidable platform to promote greater understanding and awareness, end stigmas around people who are differently-abled, and to encourage greater access and inclusion.
Marián Ávila is an accomplished Spanish model from Barcelona, who happens to have Down syndrome. She has modelled in ad campaigns for big name brands like Levi’s and El Corte Ingles and participated in the fashion industry’s biggest Fashion Weeks, including New York Fashion Week. She has been featured in worldwide media, including leading publications such as New York Times, Vanity Fair, and Harper’s Bazaar. Ávila uses social media to meet other people and gain visibility, without judgements or labels, and to help others. She calls herself a feminist and an advocate of human rights, family, and friendship.
Other confirmed celebrities include Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, and Megan Bomgaars; Denver Broncos’ Brandon McManus, world-renowned swimmer Karen Gaffney, and Colorado Rapids’ Kellyn Acosta; award-winning speakers, journalists, and TV anchors DeOndra Dixon, Frank Stephens, Kyra Phillips, John Roberts, Kim Christiansen, and Tom Green; R&B power couple Ronnie & Shamari DeVoe; and supermodel Amanda Booth. More celebrities and self-advocates will be announced in the coming weeks.
The Be Beautiful Be Yourself Fashion Show will consist of a VIP Reception with more intimate celebrity experiences for table sponsors and a quality virtual event on Saturday November 14, 2020. The event will feature GLOBAL’s 2020 Ambassador Walt Snodgrass, 18 beautiful models from 7 states and 2 countries, honorees and celebrities, and special segments including a dance battle between GLOBAL Ambassador DeOndra Dixon and her big brother Jamie Foxx.
“I know that COVID-19 has led to tough times for so many,” says GLOBAL Ambassador DeOndra Dixon, “but we have to pull together and continue to support GLOBAL and people with Down syndrome in need. I will miss the runway and the audience, but I am excited to make the virtual event a success and beat my brother in an epic dance battle!”
“Most people with Down syndrome are high risk for COVID-19, so we have put a lot of effort into education and protection over the last five months,” says GLOBAL President and CEO, Michelle Sie Whitten. “The pandemic has presented GLOBAL with many challenges this year, and we’ve met each one with strength, clarity of purpose, and compassion. We hope that people will support our first virtual event and that they know we will work hard to truly save and transform lives.”
In response to the world-wide pandemic, GLOBAL has worked hard to get out multiple versions of an informative Q&A on COVID-19/Down syndrome, provide over 140 families and 42 Down syndrome organizations with COVID-19 Emergency Relief Global Grants, and support legislation that fights discrimination against those with disabilities during crisis triage care situations.
The Be Beautiful Be Yourself Fashion Show allows GLOBAL to protect people with Down syndrome during this pandemic with their COVID-19 initiatives, provide world-class care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and fund over 200 scientists working on Down syndrome research with a focus on Alzheimer’s disease, cancer, and autoimmune disorders. The event also underwrites our advocacy in D.C., resulting in a tripling of the National Institutes of Health Down syndrome research budget, as well as outreach to over 12,000 families.
To support GLOBAL’s work, please consider a donation.
To learn more, visit: www.bebeautifulbeyourself.org
To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/
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 2,000 patients with Down syndrome from 28 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 Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the 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).
Global Webinar Series – Spring 2020 Recap
July 10th, 2020 by Global Down Syndrome Foundation
SPRING 2020
Government Funding for Down Syndrome Research Triples – What This Could Mean for Children & Adults with Down Syndrome
What You Need to Know
Overview
The exciting new Down syndrome research at the National Institutes of Health (NIH) and the NIH INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). How families and Down syndrome organizations can participate in, and benefit from research. How to use powerful medical registry resource, DS-Connect®, under the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), and learn about research opportunities. A new clinical trial aimed at normalizing immune function in Down syndrome to cure autoimmune skin conditions and improve cognitive function and quality of life. The Crnic Institute Human Trisome ProjectTM, the most ambitious dataset for people with Down syndrome that serves as a discovery engine aimed at the diseases that people with Down syndrome are highly predisposed to (e.g. Alzheimer’s disease and autoimmune disorders) and protected from (e.g. solid tumor cancers).
Speakers
Dr. Melissa Parisi |
Dr. Joaquín Espinosa |
PDF Presentation: Download Government Funding for DS Research
Dr. Melissa Parisi
PDF Presentation: Download Scientific Research in the INCLUDE Era
Dr. Joaquín Espinosa
Important NoticeThe Global Down Syndrome Foundation’s employees and/or volunteers are NOT acting as your medical professional or attorney. Responses you receive via electronic mail, phone, or in any other manner DO NOT create or constitute a doctor-patient or attorney-client relationship between you and the Global Down Syndrome Foundation (Global), or any employee of, or other person associated with, Global.
Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.
GLOBAL Webinars:
Healthy Boundaries and Relationships
CPAP, Hearing Aids, & Glasses, Oh My! How to Help my Child & Adult Wear their Medical Equipment
What Families Need to Know: Utilizing the Pediatric Medical Care Guidelines for Down Syndrome
Self-Advocates Win Landmark Federal Funding for Research: Join GLOBAL – Join the Movement
Take A Deep Breath: Lung Infection & Cognition in Down Syndrome
Supporting Aging Adults with Down syndrome and Alzheimer’s Disease
Developing an Individualized Feeding Plan for Your Child with Down Syndrome
Get Moving, Be Awesome! – Physical Therapy & Fitness for Adolescents & Adults with Down Syndrome
Promoting Skills to Survive & Thrive in the Teen & Adult Years
Multimodal Approach to Teaching Children with Down syndrome Speech & Language Skills
DESPITE CORONAVIRUS, CELEBRITIES SIGN UP IN FULL FORCE FOR GLOBAL’S BE BEAUTIFUL BE YOURSELF FASHION SHOW
June 30th, 2020 by Global Down Syndrome Foundation
Jamie Foxx, DeOndra Dixon, Caterina Scorsone, John C. McGinley, Walt Snodgrass and more support the World’s Largest Event Benefitting People with Down Syndrome
Press Contacts:
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832 Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494 |
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DENVER, CO June 30, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced an impressive roster of dedicated celebrity supporters for its marquee Be Beautiful Be Yourself Fashion Show scheduled for Saturday, October 3. The annual event is the largest fundraiser for Down syndrome in the world, raising over $20 million to date for life-saving and transformative research and medical care.
The star-studded roster includes Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, Megan Bomgaars, and Caterina Scorsone; Denver Broncos’ Brandon McManus, world-renowned swimmer Karen Gaffney, and Colorado Rapids’ Kellyn Acosta; award-winning speakers, journalists, and TV anchors DeOndra Dixon, Frank Stephens, Kyra Phillips, John Roberts, Kim Christiansen, and Tom Green; R&B power couple Ronnie & Shamari DeVoe; and supermodel Amanda Booth. A full roster of celebrities will be announced in the coming weeks.
The event will honor GLOBAL Ambassador Walt Snodgrass from Omaha, Nebraska. Walt is a sophomore at Westside High School, where he is fully included. He runs track and plays in the school band, and is part of “Sparklers” Cheer and the unified bowling team. Walt is a staunch advocate for inclusion. His contributions to his family and community, his zest for life, and compassion for others make him beloved wherever her goes. “I love modeling in GLOBAL’s fashion show in Denver, showing the world what people with Down syndrome can do. Together, we are changing the world,” says Walt. During the fashion show, 20 brilliant and beautiful models with Down syndrome will rock the runway, including GLOBAL’s Ambassador.
“At GLOBAL we are taking COVID-19 very seriously, and we are closely monitoring and following government guidelines to determine the format of the fashion show,” says Michelle Sie Whitten, GLOBAL President and CEO. “As of now, we are planning a smaller in-person event and a larger virtual component that we hope will be every bit as magical and inspiring.”
In response to the COVID-19 pandemic, GLOBAL has been a leader for the Down syndrome community – creating important resources like the Down syndrome/COVID-19 Q&A and supporting legislation that prohibits discrimination so that people with Down syndrome and other disabilities can receive COVID-19 medical care in the event there is medical care rationing. GLOBAL also provided COVID-19 Emergency Relief Global Grants to over 100 individuals with Down syndrome and their families needing food, medicine, and shelter, and most recently GLOBAL provided over 31,000 pieces of personal protective equipment (PPE) to people with intellectual and developmental disabilities who are wards of the state in Colorado.
Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show underwrite GLOBAL’s direct help to the community, excellent quality health care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and transformative research focused on the relationship between Down syndrome and Alzheimer’s disease, solid tumors, autoimmune disorders and more.
To support GLOBAL’s work, please consider a donation.
To learn more, visit: www.bebeautifulbeyourself.org
To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/
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 2,000 patients with Down syndrome from 28 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 Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the 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).
GLOBAL Statement – Black Lives Matter Movement
June 5th, 2020 by Global Down Syndrome Foundation
Dear Families, Friends and Colleagues,
The Global Down Syndrome Foundation (GLOBAL) is deeply saddened by the senseless killing of George Floyd. We mourn for his family and every person who has been a victim of violent acts perpetrated in hateful discrimination.
Today we stand together with people from all over the world. We call for justice and demand systemic change that will protect us from racism, discrimination and brutality. Even beyond protection we demand real change that provides equity in research, medical care, education, the justice system, and every area that allows us freedom and the opportunity of good health, productivity, and happiness.
We maintain that if you believe in the inalienable rights for one group you must believe in them for all people. As Congresswoman Eleanor Holmes Norton said “You can’t be for women’s rights and not for disability rights. You can’t be for disability rights and not believe in racial equality. You can’t believe in racial equality and not in the LBGT community. The only true narrative is equity for all humankind.”
People with intellectual and developmental disabilities and their family members can relate to discrimination based on our own differences – and to a history that includes the Willowbrook State School and Aktion T4 murders.
At GLOBAL we condemn racism and discrimination in all forms. Black Lives Matter to us and to the world.
Wishing you health, safety and hope during these difficult but transformative times,
Michelle Sie Whitten and the GLOBAL Team
Make Your Voice Heard. We encourage you to help educate your communities by sharing information and resources on social media using the #BlackLivesMatter hashtag.
GLOBAL DOWN SYNDROME FOUNDATION, NATIONAL DOWN SYNDROME CONGRESS, & INTERNATIONAL MOSAIC DOWN SYNDROME ASSOCIATION EXPAND COLLABORATIONS
May 7th, 2020 by Global Down Syndrome Foundation
Lifespan of Resources will have a National and International Impact
Press Contacts:
GLOBAL: Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Rice | rhonda@ndsccenter.org | C: (678) 770-6641
IMDSA: Brandy Hellard | bhellard@imdsa.org | C: (513) 571-4186
DENVER, ATLANTA, Stow MA. May 07, 2020– Today, Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the International Mosaic Down Syndrome Association (IMDSA) have announced that they will expand existing collaborations aimed at consolidating and creating Down syndrome resources across the lifespan for families.
The three national organizations will contribute funding, national and international distribution, and coordinated annual staffing associated with the Prenatal Testing & Down Syndrome Information pamphlet, the NDSC Annual Convention Global Down Syndrome Research Roundtable, the IMDSA Research & Retreat conference, and the Global Medical Care Guidelines for Adults with Down Syndrome.
“Our organizations have been collaborating for years on these important print and conference resources,” says Michelle Sie Whitten, President and CEO of GLOBAL. “To be able to make our existing collaborative resources available for free, in different modalities, and in many different languages, will have a wonderful national and international impact.”
“NDSC is proud to help support numerous Down syndrome initiatives and organizations that help our self-advocates and families,” says David Tolleson, Executive Director of NDSC. “To have a strategic plan to link our existing collaborations – from prenatal to adult care – is so important for our self-advocates and families dealing with issues across the lifespan.”
“I so appreciate this opportunity to ensure that people with mosaic Down syndrome, and the issues they face at various stages of life, will be included in future NDSC-GLOBAL national research and medical care roundtables,” said Brandy Hellard, President of IMDSA. “We are excited to help distribute the prenatal and adult guidelines at our IMDSA Research & Retreat conference and to dovetail our research to support future iterations of the guidelines.”
Expanding Collaborations:
• Prenatal Testing & Down Syndrome Information pamphlet: This resource is a result of nationwide research that included input from 400 pregnant women and over 400 clinicians working with pregnant women. It is available for free in English, Spanish & Icelandic and will expand to several other languages in the next two years. Based on feedback from genetic counselors, the additional languages will include Arabic, Nepalese, Bengalese, French, and Greek.
• NDSC Annual Convention Global Down Syndrome Research Roundtable: This resource attracts between 400-500 attendees each year. The collaboration will expand to have a virtual component that can reach more attendees and will include streams on mosaicism, autism, and other important but small sub-populations.
• IMDSA Research & Retreat conference: This resource is an annual conference attracting attendees from all over the world each year. The collaboration will expand to have a virtual component that can reach more attendees and will also have a sub-focus of supporting the Global Medical Care Guidelines for Adults with Down Syndrome.
• Global Medical Care Guidelines for Adults with Down Syndrome: This resource will be published after four years of work incorporating eleven authors who are the lead clinicians serving adults with Down syndrome across the United States. The collaboration will include joint professional surveys and concerted support for guidelines questions that have little or no research today.
To access the resource, families, friends and professionals can visit the websites of GLOBAL, NDSC, and IMDSA.
Global Down Syndrome Foundation (GLOBAL)
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.
National Down Syndrome Congress (NDSC)
The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome.
International Mosaic Down Syndrome (IMDSA)
International Mosaic Down Syndrome Association (IMDSA) is designed to provide support, information and research to any family, individual or professional whose life has been affected by mosaic Down syndrome.
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GLOBAL DOWN SYNDROME FOUNDATION ANNOUNCES EIGHT GRANT WINNERS AT THE NATIONAL DS AFFILIATES IN ACTION CONFERENCE
February 28th, 2020 by Global Down Syndrome Foundation
Global grants fund a total of 80 jobs for people with Down syndrome in the US and Peru
At DSAIA Leadership Conference; Keynote speaker Zack Gottsagen and Global President & CEO Michelle Sie Whitten with awardees (L-R): Down Syndrome Association of Greater St. Louis, Down Syndrome of Louisville, Down Syndrome Association of Connecticut, Down Syndrome Association of West Michigan, Down Syndrome Association of Delaware (Not Pictured: Down Syndrome Association of Wisconsin, Down Syndrome Network Arizona, Sociedad Peruana de Sindrome Down)
Press Contacts:
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832
Orlando, FL and DENVER, CO February 28, 2020 – Today, Global Down Syndrome Foundation (Global) announced eight new Global Self-Advocate Employment Initiative Grant winners at the national Down Syndrome Affiliates in Action (DSAIA) Annual Leadership Conference.
“We started this grant program in 2016 after attending a DSAIA conference and realized that many Down syndrome organizations cannot afford to employ people with the condition despite advocating for other companies to do so,” said Michelle Sie Whitten, President and CEO of Global. “To address that, we worked with our members on this grant program and we are proud to have supported 80 self-advocates jobs from 20 states and one in Peru! I’m so proud of our team and our members for making this all a reality in such a short time.”
The 2020 winners are: Down Syndrome Association of Connecticut, Down Syndrome Association of Delaware, Down Syndrome Association of Greater St. Louis, Down Syndrome Association of West Michigan, Down Syndrome Association of Wisconsin, Down Syndrome Network (AZ), Down Syndrome of Louisville, and Sociedad Peruana de Sindrome Down (Peru). This year’s Global Self-Advocate Employment Initiative Grants will underwrite self-advocate volunteers transitioning to paid contractors or staff, expansion of hours for self-advocate staff, work-place training, and public speaking training.
Past winners appreciate that Global’s grants can be multi-year, and that many grants have led to leveraged funding.
“Our organization is dedicated to helping our adults with Down syndrome develop vocational and professional skills. We have been fortunate to earn more than one of Global’s transformative employment grants, allowing us to train, prepare, and hire self-advocates for employment especially in our hospital clinic,” says Lauren Camp Gates, Executive Director of Down Syndrome Association of Delaware.
Erin Suelmann, Executive Director of Down Syndrome Association of Greater St. Louis agrees, “Global has helped us expand our ‘Ready to Work Employment Initiative’ programs. In 2018, Global’s grant empowered us to hire an Employment Assistant Ambassador and now we have on-going funding for that position. This year we are so grateful for another grant to grow our staff and hire a Peer Trainer for Social Enterprise.”
2020 grant winners received their award certificates from Whitten and DSAIA conference keynote speaker, Zack Gottsagen. Gottsagen, who starred in the award-winning hit indie film, The Peanut Butter Falcon, is an example of a hardworking individual with Down syndrome excelling in his career. Whitten is an executive producer of The Peanut Butter Falcon and led Global Members in marketing initiatives to ensure the film’s distribution success.
“I wanted to act from the time I was three,” said Gottsagen. “My mom listened to me so I took acting lessons for years. Then two acting coaches wrote a film for me to star in and I won awards for my acting at SXSW and Palm Springs Film Festivals. I showed up, worked hard, got this big break, and presented at the Oscars. It is important that parents and organizations have high expectations and provide training to children and adults with Down syndrome.”
Global membership benefits include supporting life-saving and transformative initiatives, Global’s award-winning magazine Down Syndrome WorldTM, Down syndrome expert webinars, and two first-in-kind grant programs – Global Membership Educational Grants and Global Membership Self-Advocate Employment Initiative Grants. To become a Global Down Syndrome Foundation member or to learn more about member benefits, visit: https://www.globaldownsyndrome.org/become-a-member/.
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 2,000 patients with Down syndrome from 28 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 Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the 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).
WDSD Redirect
February 5th, 2020 by Global Down Syndrome Foundation
ETC
Finding Her Voice
January 24th, 2020 by Global Down Syndrome Foundation
From Down Syndrome WorldTM 2019 Issue 4 of 4
Multi-Talented Performer Meg Ohsada Has Learned That, When It Comes To Communication, Words Aren’t Always Necessary.
This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door! MEG OHSADA, a Canada native who happens to have Down syndrome, has become an international superstar known for her competitive figure skating and dancing with four Special Olympic medals and counting. She is also known for her extraordinary, widely-collected artwork. At just 25-years-old, Meg also has her artwork displayed and purchased at prestigious galleries around the world. And believe it or not, that’s not all she does! She recently took up rhythmic gymnastics and modeling, too.
Born to Japanese parents who immigrated to Canada, Meg is one of three girls. Although Meg is nonverbal, she communicates her powerful and inspirational messages through her passion for sports, fashion, advocacy, and art.
Her accomplishments serve as an inspiration to the Down syndrome community and she recently began modeling to continue her advocacy work for people who are differently-abled.
“Meg is the family’s backbone,” says her mother, Noriko Ohsada. “Her gentle presence has given us love, strength, inspiration, and hope for the future.
A DEDICATED FAMILY
Noriko, who immigrated to Toronto, Canada, from Japan with her husband, Kaoru Ohsada, did not know what Down syndrome was until Meg was born in 1993. In fact, Noriko recalls, she had to learn the word “chromosome” in English when a doctor told her that additional testing was necessary.
Noriko remembers being very scared when she researched the condition. She read that Meg would not live long and would need to be institutionalized. Thankfully, the medically inaccurate information did not deter her and Kaoru’s belief in Meg’s abilities.
From the time Meg was born, her parents noticed she was a happy baby and an energetic, passionate child. Shortly after Meg was born, Noriko and Kaoru had two more daughters: Sari, now 23, and Juli, now 22.
Meg always had difficulties with verbal communication and continued to struggle to talk after undergoing speech therapy.
In 1997, searching for a fresh start and better access to medical care, the family moved from Toronto to Canmore, a small town in Alberta, Canada at the edge of the Canadian Rockies. That’s where Meg’s remarkable artistic abilities began to take shape.
“As my children are close in their age, I always introduced the same activities to all of them,” Noriko says. “Figure skating was the perfect activity for the girls to be athletic and beautiful at the same time. I truly enjoyed watching them.”
“We noticed Meg could remember movements with music very quickly,” Noriko says. “That’s when we realized that performing arts was a way of self-expression.”
LOUDER THAN WORDS
Meg took to figure skating like a natural, impressing her family and her instructors by skating through intricate choreography, remembering every step. At age 8, she joined a local figure skating club and eventually began attending a weekly Special Olympics figure skating program in Calgary, about an hour from Canmore. Meg gets on the ice four to six days a week, for an hour or so a day. Plus, she does yoga, gymnastics, and other physical activities to stay in shape.
She has excelled as a figure skating competitor, earning two gold medals at the 2019 Special Olympics Alberta Winter Games and two silver medals at the 2013 Special Olympics World Games in Pyeongchang, South Korea. In 2015, she competed in the Canada Games, which features athletes of all abilities. She continues to inspire other skaters with and without Down syndrome at her home rink in Canmore.
Meg began her dance career at age 14 and attends four dance classes per week. She is also a rhythmic gymnast, a sport she took up at age 18.
She competed in dance in both the 2015 and 2017 Special Olympics World Games, placing fourth at the 2017 Winter Games in Austria. In 2017, she also performed a ballet solo with Ignite Dance at Banff Centre in Banff, Canada, near her hometown of Canmore.
A MULT-TALENTED ARTIST
Movement isn’t Meg’s only form of expression. At age 21, Meg began a career as an artist, taking classes at the Indefinite Arts Centre in Calgary.
Her artwork has appeared in galleries in Hong Kong, Seoul, and South Korea, and she was the featured artist at a local gallery, artsPlace, in Canmore.
Meg’s favorite piece is an abstract self-portrait of herself dancing.
“She expresses herself through art, and she loves public exhibition opportunities where she can get that recognition from other people,” Noriko says.
Last year, Meg took up modeling as a way to showcase the beauty and talent of people who are differently-abled. “I believe Sari and Juli learned many wonderful lessons from Meg, including her enthusiasm, optimism, and compassion toward others,” Noriko states.
Meg encourages everyone to work hard and find their own voice. Through her multi-faceted art forms, she shares an important message: “Do what you love, and great things can happen.”
Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!
Changing the World One Stage at a Time
January 24th, 2020 by Global Down Syndrome Foundation
From Down Syndrome WorldTM 2019 Issue 4 of 4
When 16-Year-Old Courtney Gaines Has Her Eyes on the Prize, There’s No Stopping Her. Her Latest Endeavor? Rocking the Runway at Global’s Fashion Show with Model & Actress Mikaela Hoover
This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door! An actress, singer, dancer, and model, 16-year-old Courtney Gaines is no stranger to the spotlight. She is an active member of her community, an Ambassador for a women’s non-profit, and most recently, an entrepreneur. She is determined to show the world that she can do whatever she sets her mind to. What better next stop than to model at the largest fundraiser for Down syndrome in the world?
“The more people see her, the more people love her,” says Courtney’s mother, DeAnna Gaines. Courtney is engaged with many local groups Oklahoma including the Greater Love Missionary Baptist Church, Shining Starz Special Needs Cheer Squad, Down Syndrome Association of Central Oklahoma, and the Air Force JROTC. “Seeing how Courtney’s energy radiates onto everyone around her, we looked for other opportunities for her to shine.”
When DeAnna and Courtney found the Global Down Syndrome Foundation (Global) online they were impressed by the organization’s government work and intrigued by Global’s fashion show. Courtney’s passion for performance and advocacy for inclusion seemed to make her the perfect fit.
“I love to help others and listen to them,” Courtney says. “I want to do good things for others in everything I do.” She is an Ambassador for GirlTrek, the largest national public health non-profit supporting African-American women and girls in the U.S., with a special strategy to connect with women with special needs. Truly a jack of all trades, Courtney also recently started plans for her own business, an online clothing store called CloZet 21c which would raise funds for non-profits.
Courtney’s vibrant personality, loving nature, and happy smile were evident in her audition and she became the first person in Oklahoma to be selected to model in Global’s marquee annual fundraiser, the Be Beautiful Be Yourself Fashion Show. Courtney rocked the runway with Mikaela Hoover, a model, actress, and Instagram influencer who is beautiful inside and out.
Mikaela learned about Global when working on a film in Colombia with her colleague, John C. McGinley, who is a Global board member and international spokesperson. Growing up, Mikaela was very close with her cousin Bobby, who had Down syndrome, and was eager to get more involved in philanthropic work. McGinley told her about Global’s work and Mikaela reached out right away to get involved.
SHINING STARS
Courtney was thrilled to work with a fellow model and actress. “It was so much fun modeling with her! We took selfies and photos backstage too,” Courtney recalls. “She is a great model, she’s so pretty, cool, and very nice.”
As natural performers, Mikaela and Courtney have a lot in common. Mikaela began dancing at the age of 2, and by the time she started school, she was starring in her school’s plays. Mikaela started her acting career in 2006 and is best known for her roles in superhero films including the 2014 box office hit Guardians of the Galaxy and the 2010 superhero dark comedy Super starring Rainn Wilson, Ellen Page, Liv Tyler, Kevin Bacon, and Nathan Fillion. Courtney loves to bring her talents of singing, dancing, and acting to the stage. She was recently in the stage production of Mary Poppins Jr. with Kaleidoscope.
“Courtney was so excited to be on that runway. She knew exactly what she wanted to do and the poses she wanted to strike, and no one was going to stop her,” says Mikaela, who was Courtney’s celebrity escort. “Courtney has so much ambition and carries herself with such grace and independence.”
Both first-timers at Global’s Be Beautiful Be Yourself Fashion Show, Courtney and Mikaela were soaking in every moment. “All of the models had such beautiful energy around them, each one was beaming and shining so bright. It was such an honor to be back there with them,” Mikaela says.
Courtney’s favorite part of the night was blowing her mom a kiss when she was at the top of the stage. “Nothing beats seeing my Courtney up there on stage, dressed to the nines, in the company of Mikaela
and of course our heroes like Jamie Foxx and Quincy Jones,” says DeAnna.
Global’s Be Beautiful Be Yourself Fashion Show raises critical awareness and funds for Down syndrome. This year’s event raised an incredible $2.5 million for Down syndrome research and medical care.
“Global is changing that the narrative surrounding Down syndrome through advocacy and education,” says Mikaela. “Their beauty simply shines from within, and that is definitely something that we need to see more of, not just in the media, but in our world today.”
“All of the models had such beautiful energy around them,” said Mikaela Hoover. “That is definitely something we need to see more of.”
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$1.4 TRILLION SPENDING PACKAGE SIGNED INTO LAW BY PRESIDENT TRUMP SEES BIPARTISAN RESULTS
January 3rd, 2020 by Global Down Syndrome Foundation
Funding Increases for the National Institutes of Health (NIH) and Down Syndrome Research Lauded by Global Down Syndrome Foundation
Photo by Marleen Van den Neste
Press Contacts:
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832
December 22, 2019, Denver, CO– On Friday, President Trump signed a $1.4 trillion spending package that will fund the government until September 2020 and averted a government shutdown. Earlier in the week, the package passed the House and Senate with victories and compromises on both sides of the aisle.
“Finally, we have secured the funds and resources for our military — our national security,” said Senator Richard Shelby (R-AL), Chairman of the Senate Appropriations Committee who also heads the appropriations subcommittee on defense. “This package includes a significant increase in defense funding and the largest pay raise in a decade for our men and women in uniform.”
Chairwoman of the House Appropriations Committee Nita Lowey was also pleased with the results, “I am particularly proud that House Democrats prevailed in securing historic investments For the People, including record funding levels for Head Start and lifesaving medical research at NIH, and in funding priorities vital to our shared security, like gun violence prevention research and election security grants to states.”
Included in the spending package was legislation providing a 7% increase or $2.6 billion more funding to the NIH for an annualized budget of $41.7 billion. Legislation also highlights a “minimum” of $60 million for Down syndrome research in FY2020 through NIH’s Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) trans-NIH project. This would bring total Down syndrome research funding up to $98 million for the year.
Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation, issued the following statement:
“Global thanks the Administration, our champions in Congress, and leadership at NIH who made Down syndrome research and medical care a priority resulting in the NIH INCLUDE project. It is important to note that this result reflects a decade of hard work and two decades of inequity in funding for our Down syndrome community.
The key turning point was the Labor, Health and Human Services, Education and Related Agencies House Appropriations Subcommittee hearing on Down syndrome research in October 2017. At the hearing, testimony from Global Ambassador, Frank Stephens, received a standing ovation, 100% bipartisan support, and over 150 million views on C-Span and other outlets.
This first ever hearing of its kind and testimonies were made possible by Congresswoman Cathy McMorris Rodgers, Chairwoman Rosa DeLauro, and Ranking Member Tom Cole with further support from Senators Roy Blunt, Patty Murray, and so many others from both sides of the aisle.
The FY2020 budget for NIH and Down syndrome research signals a clear message that the longevity and improved health outcomes of people with Down syndrome is important, and that their unique disease experience can also benefit others without Down syndrome. Global is proud and incredibly grateful to have worked with the Administration, NIH, and Congress to secure the funding for this research.”
The INCLUDE project focuses on diseases and conditions like Alzheimer’s, blood cancers, and autoimmune disorders that have a higher prevalence among individuals with an extra copy of chromosome 21 as well as conditions like solid tumor cancers that are rare among individuals with Down syndrome. The INCLUDE Steering Committee is chaired by Dr. Lawrence Tabak, NIH Principal Deputy Director in partnership with Dr. Diana Bianchi, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and Dr. Gary Gibbons, Director, National Heart, Lung, and Blood Institute (NHLBI) as co-chairs.
To learn more about the NIH INCLUDE project, visit https://www.nih.gov/include-project/include-project-research-plan#leadership
To learn more about the Crnic Institute for Down Syndrome, visit https://medschool.cuanschutz.edu/linda-crnic-institute
To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org
About Global Down Syndrome Foundation
The Global Down Syndrome Foundation is at the forefront of Research, Medical Care, Education, and Advocacy dedicated to significantly improving the lives of people with Down syndrome. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome, the Rocky Mountain Alzheimer’s Disease Center, the Anna and John J. Sie Center for Down Syndrome, and a new pilot Adult Clinic. Global invites its supporters to celebrate over a decade of milestones in helping people with Down syndrome at their Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.
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