Autism and Down Syndrome know no borders: mothers, families and professionals laying the foundation for protection and fulfillment

DENVER, CO – February 28, 2023 – The Global Down Syndrome Foundation (GLOBAL) President and CEO, Michelle Sie Whitten, has been invited to speak on a special guest panel at the United Nations 67^th Commission on the Status of Women that will take place in New York City on Friday, March 17, 2023 at 1:15 p.m. ET in United Nation Conference Room 2.   

Whitten will present on how research and medical care in the United States is elongating life and improving health outcomes for those with Down syndrome and Autism, and how this renaissance is positively changing perceptions worldwide.

Whitten will join other panelists:

• Gabriel Cobb, Triathlete and self-advocate with Down syndrome
• Helen Minkoulou, Parent & President of the Association for the Supervision of Child Victims of Rare Disease of Cameroon
• Everett & Emily McKiernen, Self-advocate with autism and his mother
• Chloe & Kurt Kondrich, Self-advocate with Down syndrome and her father
• Zaboya Dama Adele Judith Epse Makomra, Promoter in the implementation of a day-care and socio-professional training center for people with autism and Down syndrome in Yaoundé, Cameroon
• Yves Akamba, Vice President of the Center for Applied Research on Sustainable Development

The Sponsoring Member State is the Permanent Mission of Cameroon to the United Nations and the Sponsoring Organization is the Center for Family and Human Rights.

The symposium brings together experts, self-advocates and family members from the Down syndrome and autism communities to discuss the challenges women and families face raising children with development disabilities. It will address concrete cultural, legal and policy changes that can help families welcome and care for children with Down syndrome and/or Autism, including their transition from youth into adulthood.

In December 2011, the General Assembly declared 21 March as World Down Syndrome Day (A/RES/66/149). The General Assembly decided, with effect from 2012, to observe World Down Syndrome Day on 21 March each year.

To attend this event please RSVP by Friday, March 10, 2023 at March17UNRSVP@gmail.com. For more information and RSVP details, please visit the sponsoring organization website.

A popular video created by GLOBAL in honor of World Down Syndrome Day will be presented at the conference—watch here.

In addition to providing an important keynote presentation at the United Nations in New York City, GLOBAL will also celebrate World Down Syndrome Day with an in-person and virtual dance party on Friday, March 24. For in-person guests, GLOBAL’s World Down Syndrome Dance Party will start at 6:30 p.m. MT and feature TV and radio personality Kathie J, DJ Lo, complimentary food, drinks, a dance-off and more! Sign up here.

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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 2,200 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. 

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World^TM . GLOBAL also organizes the 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). 

Experts from Children’s Hospital Colorado and CU Anschutz Medical Campus are Key Collaborators

DENVER– February 27, 2023 – Global Down Syndrome Foundation (GLOBAL) announced today that it has received a transformative grant from The Salah Foundation. The grant will fund three ambitious areas: (1) the purchase and application of important diagnostic and treatment equipment that will stop the progression of keratoconus in patients with Down syndrome, (2) a first-in-kind series of workshops for professionals and families that raise awareness and understanding related to eye and vision issues in children and adults with Down syndrome, and (3) a white paper that will inform the first medical care guidelines for eye issues and vision loss in adults with Down syndrome.  

Keratoconus is an underdiagnosed, progressive eye disease where the front layer of the eye (the cornea) thins and weakens over time causing a cone-like bulge. The condition, if left untreated, can lead to serious vision problems including blindness. While keratoconus is not reversible, earlier detection can result in proactive treatment to halt the progression of the condition and can ultimately save the patient’s vision.

It is estimated that less than 2% of the general population suffers from keratoconus versus up to 30% in the Down syndrome population.

This generous Salah grant will underwrite a Pentacam Comprehensive Eye Scanner and Cross-Linking System. The Pentacam is an important piece of equipment that provides more precise measurements of the central cornea as compared to any other ocular measurement instrument. This improves the ability of the eye clinician to diagnose ocular conditions, especially keratoconus. The Cross-Linking System is the equipment used to perform corneal cross-linking, a procedure using riboflavin and UV light to strengthen the cornea. Cross-linking is the only treatment proven to halt the progression of keratoconus and is a fairly new procedure in the U.S. that received FDA approval in 2016.

Dr. Emily McCourt, MD, Chief of Pediatric Ophthalmology at Children’s Hospital Colorado and Dr. Michael Puente, MD, pediatric ophthalmologist at the University of Colorado School of Medicine and Children’s Hospital Colorado, have treated over 500 patients with Down syndrome over the last several years, as referrals from the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

“I can tell you from first-hand experience the Pentacam and the cross-linking procedure can and will save the vision for individuals with Down syndrome,” says Dr. McCourt. “Dr. Puente and I are excited to work with GLOBAL and fulfill our ambitious goals associated with this grant.”

Dr. McCourt and Dr. Puente will be organizing the workshops and writing the white paper that will inform future guidelines on vision and eye care for adults with Down syndrome. Dr. Puente is the Director of Medical Student Education in Ophthalmology at University of Colorado School of Medicine and his interests and expertise also include eye care for adults with intellectual disabilities.

“Our meetings on this project with GLOBAL have been so exciting. I believe the results will have an extraordinary impact on the lives of hundreds of individuals with Down syndrome suffering from keratoc

onus and other eye issues. I cannot stress enough how meaningful that is to the patients and their families,” adds Dr. Puente.

“Having our 18-year-old daughter get the cross-linking procedure was life-changing,” says Jennifer Revesz. “Lauren is a wonderful daughter and sibling who happens to have a dual diagnosis of Down syndrome and Autism. To add blindness to her challenges is really unthinkable. We are so grateful to Dr. McCourt for helping us to get cross-linked and preserving Lauren’s vision.”

“Generous support from The Salah Foundation has allowed us to provide life-changing resources to the amazing people with Down syndrome we serve,” says Michelle Sie Whitten, President & CEO of GLOBAL.  “Noreen, Fred, Megan and the whole Salah family have long believed in our work, and they truly care about our children and adults with Down syndrome. With their help we are delivering on our mission to elongate life and improve outcomes – we are so grateful!” 

“We applaud the Global Down Syndrome Foundation’s work in addressing the often overlooked population of adults with Down syndrome,” says Noreen Salah Burpee, Executive Director of The Salah Foundation. “The Salah Foundation is rigorous in its grant making and we anticipate the results of this grant to inform improved, evidence-based eye care and outcomes for this community .”

The Salah Foundation has been a long-time supporter of GLOBAL, having previously provided a lead gift of $1 million for its state-of-the-art education center, as well as additional generous grants associated with life-skills and independence for adults with Down syndrome.  

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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 has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,200 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. 

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World TM . GLOBAL also organizes the 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). 

About The Salah Foundation

The Salah Foundation is a private foundation, by invitation only, that supports non-profit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is a special interest in education, medical research, community development, and self-sufficiency programs aimed at the economically disadvantaged, the young, the elderly and the disabled. To learn more, visit www.salahfoundation.org. 

Leads Committee Efforts to End Discrimination Against Individuals with Disabilities

Washington, D.C. – Eastern Washington Congresswoman Cathy McMorris Rodgers (WA-05) today announced the launch of the bipartisan, bicameral Congressional Task Force on Down Syndrome. She is joined in leading this group by Congresswoman Eleanor Holmes Norton (D-DC) and Senators Jerry Moran (R-KS) and Bob Casey (D-PA).

“My oldest son Cole was born with Down syndrome, and he is one of the greatest blessings in my life. Getting to see the world through Cole’s eyes has made me a better mom and a better legislator,” said Rodgers. “I’m reminded every day that the Down syndrome community is full of potential just waiting to be unleashed, which is why this task force is so important. Together, we can educate those around us and show the world that nobody is bound by the conditions of their birth.”

The Congressional Task Force on Down Syndrome will serve as an informal group of members dedicated to educating their colleagues and their staff about Down syndrome, while working towards the common goal of promoting legislative activities and public policies that will enhance the quality of life for those with Down syndrome.

“I am excited to once again be co-chairing the Congressional Task Force on Down Syndrome for the 118th Congress,” said Norton. “Thanks to the hard work of the task force in 2014, President Obama signed the ABLE Act in the 114th Congress, which created tax-free savings accounts for individuals with disabilities. Down syndrome is a personal issue for me, and I am proud to be fighting for Americans with Down syndrome and their families as we begin a new legislative session.”

“Through increased federal resources and great partners in the medical research field, Down syndrome research has improved significantly in recent years,” said Moran. “I am grateful to continue co-chairing the Down Syndrome Task Force to accelerate research on Down syndrome, including its connection to Alzheimer’s disease, and to promote policies that support individuals with Down syndrome and their families.”

“I’m proud to be a co-chair of the bipartisan Down Syndrome caucus and bring attention to the experiences and potential of people with disabilities,” said Casey. “From expanding ABLE Accounts so people with disabilities can save for the future to phasing out the practice of employers paying subminimum wage, we have made progress in our mission to knock down the barriers that people with Down syndrome face. As we convene this Caucus, I know we are all committed to improving the lives of people with Down syndrome by working hand in hand with the Down syndrome community.”

The task force is supported by three leading national Down syndrome advocacy organizations: The Global Down Syndrome Foundation (GLOBAL), National Down Syndrome Congress (NDSC), and National Down Syndrome Society (NDSS). Representatives from these organizations applauded today’s announcement, issuing the following joint statement:

“As three leading national Down syndrome organizations, the Global Down Syndrome Foundation, the National Down Syndrome Congress, and the National Down Syndrome Society, we stand in strong support of this task force and applaud Congresswomen Cathy McMorris Rodgers and Eleanor Holmes Norton and Senators Robert Casey and Jerry Moran on their leadership.  The reintroduction of a bipartisan, bicameral Congressional Task Force on Down Syndrome signifies the 118th Congress’s commitment to increasing education and awareness of Down syndrome and advancing legislation that positively impacts the Down syndrome community,” said Michelle Sie Whitten (GLOBAL), Jordan Kough (NDSC), and Kandi Pickard (NDSS)

Today’s announcement comes immediately after an Energy and Commerce Health Subcommittee hearing on Cathy’s legislation, the Protecting Health Care for All Patients Act (H.R. 485), which would expand access to lifesaving cures and prevent discrimination against Americans with disabilities.

Top Left: Rep. Cathy McMorris Rodgers (WA-05); Top Right: Rep. Eleanor Holmes Norton (D-DC), Bottom Left: Senator Jerry Moran (R-KS); Bottom Right: Rep. Bob Casey (D-PA)

Below are excerpts from her remarks as prepared for delivery:

“Finally, we will discuss why it is important to take action to protect people with disabilities with the Protecting Health Care for All Patients Act.

“It would ban Quality Adjusted Life Years – or QALYs – that discriminate against people with disabilities and patients with debilitating or life-threatening health conditions. 

“QALYs undervalue treatments for patients who have shorter life spans than others.

“In countries with QALYs, the most vulnerable get pushed to the back of the line for treatment. People like those with cystic fibrosis, ALS, or people like my son with Down syndrome.

“The government says their lives don’t matter as much. They’re not valuable enough.

“In America—where we have led the world in amazing medical breakthroughs and innovation—we must ban QALYs and strongly affirm that every life is worth living.

“It is my sincere hope we can move forward on this bill in a bipartisan way.

“Families need hope. There is inherent dignity in every human life. 

“That is why we are coming together today in our first legislative hearing this Congress … as we work together to promote life, liberty, and the pursuit of happiness for all.

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Global Down Syndrome Foundation, Centro UC Síndrome de Down and Japan Down Syndrome Association Join Forces to Translate & Provide Online Access to the GLOBAL Adult Guideline

Denver –December 29, 2022 – Today, Global Down Syndrome Foundation (GLOBAL), published a Spanish and Japanese version of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome (“GLOBAL Adult Guideline”) in collaboration with the El Centro de la Universidad Católica de Síndrome de Down in Chile (Centro UC Síndrome de Down or CUSD) and the Japan Down Syndrome Association (JDSA).

The GLOBAL Adult Guideline is the first evidence-based guideline for adults with Down syndrome and was published in English in JAMA, the Journal of American Medical Association, in 2020. The guideline authors include the directors of the largest adult Down syndrome clinics in the US, and the current nine medical topics are: behavior, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease. GLOBAL is working to expand the topics to include sleep apnea, solid tumors, leukemia, vision/eye care, and physical therapy and fitness.

In addition to the 80-page guideline for medical professionals, GLOBAL has also published a much shorter family-friendly version, and toolkits that include easy to follow assessments for Celiac disease, Diabetes, Behavior, and annual check-ups.

All of these resources for adults are now available in Spanish and Japanese at no cost on the GLOBAL website, DS-Connect®: The Down Syndrome Registry, CUSD website, and JDSA website. The translations were possible in part due to a generous donation by GLOBAL Board Member and Colorado Rockies Owner, Charlie Monfort. 

“GLOBAL is pleased to be able to reach Spanish and Japanese speakers who have Down syndrome and their families in the U.S. in collaboration from the National Institutes of Health/DS-Connect®,” says Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation. “The NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development has been supportive from the beginning. We are also deeply grateful for Dr. Macarena Lizama at CUSD and Dr. Hiroshi Tamai, President of JDSA, Dr. Chisen Takeuchi of the JDSA for helping to ensure this reaches hundreds of thousands of Spanish and Japanese speakers around the world.”

GLOBAL has worked with Congress since 2006 advocating for a trans-NIH Down syndrome research funding program and for increased funding. In December of 2010, GLOBAL and the NIH co-organized the first Down syndrome research conference with a focus on registries and biobanks. One important result was the establishment of DS-Connect®: The Down Syndrome Registry.

“It is so important for me and other people with Down syndrome to have this in Spanish,” says Yadira M. Carrillo, a 27-year-old self-advocate and entrepreneur who happens to have Down syndrome. “I need to know how to take care of myself as an adult!”

“Seeing the guideline in Spanish feels like GLOBAL values Spanish -speaking families like mine,” said Yadira Carrillo, mother of a 27-year-old daughter who has Down syndrome. “Language is a barrier some families face to receiving medical care and I know this will help so many people in the U.S. and internationally.”

In Chile, GLOBAL has been working closely with Dr. Lizama on many projects including creating the Spanish version of the GLOBAL Guideline and the COVID-19 and Down Syndrome Resource.

“What Michelle, Bryn Gelaro and their team have accomplished in research and medical care is so important,” says Dr. Macarena Lizama, Medical Director of the El Centro de la Universidad Católica de Síndrome de Down in Chile. “We are honored to collaborate with GLOBAL on this transformative resource and to improve medical equity, especially for Spanish-speaking countries where medical care access and basic resources for people with Down syndrome can be very scarce. I will be very proud to use this resource in my clinic and share it with my colleagues and families.”

Dr. Hiroshi Tamai echoes this sentiment, “We are grateful for the collaboration we have had with GLOBAL and to have this important resource in Japanese is a dream come true. My daughter and thousands of Japanese adults with Down syndrome will surely benefit. We look forward to working with GLOBAL and adding new medical areas in the next few years.”

GLOBAL is currently working with the Ministries of Health in both Chile and Japan to ensure the guidelines are available free of charge and easily findable on their disability home pages.

 To learn more about the GLOBAL Adult Guideline and download your copy today, visit www.globaldownsyndrome.org/medical-care-guidelines-for-adults/ 

To learn more about Global Down Syndrome Foundation, visit www.globaldownsyndrome.org 

# # #  

About Global Down Syndrome Foundation 

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,200 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. 

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World^TM . GLOBAL also organizes the 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). 

IMPORTANT NOTICE 

While content of this press release and the GLOBAL Guideline was developed by GLOBAL and the GLOBAL Guideline Authors, we are unable and do not intend to provide medical advice or legal advice to individuals. Please contact your health care provider(s) or legal advisor(s) for questions specific to your individual health history or care.  

Press Contacts            

Anca Call                                                          
acall@globaldownsyndrome.org         

720-320-3832 

グローバルダウン症財団（米国）・日本ダウン症学会（JDSA）・

UC ダウン症センター（CUSD、チリ） 成人医療ガイドラインの共同翻訳・配布

デンバー – 2022 年 12 月 22 日 – 本日、グローバルダウン症財団は、グローバルダウン症成人医療ガイドライン（以下ガイドライン）の日本語版とスペイン語版を公開しました。

このガイドラインは、ダウン症のある成人について、エビデンスに基づく初のガイドラインで、2020 年に米国医師会雑誌 JAMA に掲載されました。ガイドラインの執筆者には、米国の主要な成人ダウン症クリニックの院長らが名を連ねており、現時点での医療的項目には、行動障害、認知症、糖尿病、循環器系疾患、肥満症、環軸椎不安症、骨粗鬆症、甲状腺疾患、セリアック病の９つがあげられています。今後、睡眠時無呼吸症候群、固形がん、白血病、視力障害・眼科疾患、理学療法・運動療法などに関する項目の拡充を行う予定です。

医療従事者向けの 80 ページのガイドラインに加え、より短いご家族向けバージョンも公開します。また、セリアック病、糖尿病、行動障害、定期健康診断のための簡単なアセスメント

（チェックリスト）を含むツールキットも公開します。

これらの成人ダウン向けのリソースはすべて、GLOBAL 公式サイト、DS-Connect®（ダウン症レジストリ）、CUSD ウェブサイト、および JDSA ウェブサイトにて、無料でダウンロードできます。

「米国国立衛生研究所/DS-Connect®の協力のもと、米国のダウン症患者およびそのご家族にスペイン語と日本語で情報を提供できることを嬉しく思います」と、グローバルダウン症財団理事長兼 CEO のミシェル・ジー・ウィッテンは述べています。「NIH（アメリカ国立衛生研究所）のユーニスケネディシュライバー国立小児保健人間開発研究所には、当初からご協力いただきました。また、CUSD のマカレナ・リザマ医師、JDSA 理事長の玉井浩医師、JDSA の竹内千仙医師には、世界中の何十万人ものスペイン語と日本語を話す人々にこのガイドラインを届けるためのご支援をいただき、深く感謝いたします。」

グローバルダウン症財団は、2006 年から NIH 横断的なダウン症研究助成プログラムの設立と助成金の増額を議会に働きかけてきました。2010 年 12 月には、NIH  と共同で、レジストリとバイオバンクに焦点をあてた初のダウン症についての研究大会を開催しました。その重要な成果のひとつが、ダウン症レジストリである DS-Connect®の立ち上げです。

「私を含め、他のダウン症のある人たちにとって、このガイドラインがスペイン語になることはとても重要です。」と、ダウン症をもって生まれた 27 歳のセルフアドボケート・起業家のヤディラ・カリージョは言います。「私は大人として、自分自身のケアをする方法を知る必要があるのです！」

ダウン症のある 27 歳の娘を持つ母親、ヤディラ・カリージョさんは、「スペイン語で書かれたガイドラインを見ると、グローバルダウン症財団が私のようなスペイン語を話す家族を大切にしているように感じられます」と述べています。「医療を受ける際に言語が障壁となる家族もいますから、このガイドラインは米国内外の多くの人々の助けになると思います。」

チリでは、グローバルダウン症財団はガイドラインのスペイン語版やCOVID-19 とダウン症と

 の関連についての資料作成など、多くのプロジェクトでリザマ医師と緊密に連携しています。

「ミシェルおよびブリン・ジェラロさんたちチームが研究と医療において成し遂げたことは、とても重要なことです」と、チリのカトリック大学ダウン症センター（ El Centro de la Universidad Católica de Síndrome de Down）の医療ディレクター、マカレナ・リザマ医師は語ります。「特にスペイン語圏では、ダウン症患者のための医療アクセスや基本的な資源が 非常に乏しいため、この革新的なリソースでグローバルと協力し、医療の公平性を改善できる ことを光栄に思っています。私はこのリソースを自分のクリニックで使用し、私の同僚やご家 族と共有できることを大変誇りに思います。」

玉井浩医師（大阪医科薬科大学）も同様に述べています。「グローバルとの協働に感謝しています。この重要なリソースが日本語で提供されることは夢のようです。私の娘や何千人ものダウン症のある方が恩恵を受けることでしょう。今後もグローバルと協力し、今後数年で新しい医療分野を追加していくことを楽しみにしています。」

現在、日本・チリ両国の厚生省と協力し、ガイドラインが無料で提供され、障害のある方向けのホームページで簡単に閲覧できるよう取り組んでいます。

グローバルダウン症成人医療ガイドラインの詳細とダウンロードは、以下のサイトをご覧ください。www.globaldownsyndrome.org/medical-care-guidelines-for-adults/

グローバルダウン症財団公式サイト www.globaldownsyndrome.org

【グローバルダウン症財団について】

グローバルダウン症財団（グローバル）は、ダウン症のある人々の命を救い、健康状態を劇的に改善するために活動している米国最大の非営利団体です。3,200 万ドル以上を寄付し、初のダウン症研究機関を設立、米国 33 州お よび 10 カ国から集まった 400 人以上の研究者と 2,200 人以上のダウン症患者を支援しています。また、米国議会や国立衛生研究所（NIH）と密接に連携し、ダウン症の研究とケアに関する米国における主要なアドボカシー機関となっています。また、グローバルには 100 以上のダウン症関連団体がメンバー登録しており、さらに、アンシュッツ・メディカル・キャンパス内にある「ダウン症クルニック研究所」「ダウン症ジーセンター」「コロラド大学アル

 ツハイマー・認知センター」といった関連団体のネットワークの一翼を担っています。

グローバルは「ダウン症成人医療ガイドライン」「出生前・新生児ダウン症情報」および受賞歴のある広報誌「ダウン症ワールド」などの医療出版物を発行しています。また、世界最大のダウン症のための募金活動である「Be Beautiful Be Yourself Fashion Show」を主催しています。Globaldownsyndrome.org をご覧ください。また、ソーシャルメディア（Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome）もフォローしてください。

【重要事項】

本プレスリリースおよびガイドラインの内容は、グローバルダウン症財団およびガイドライン執筆者によって作成されたものですが、個人に対して医学的なアドバイスや法的なアドバイスを行うことはできませんし、行うことを意図していません。個々の健康管理やケアに特化した問い合わせについては、医療機関や法律アドバイザーにお問い合わせください。

＜問い合わせ先＞

Anca Call    acall@globaldownsyndrome.org     米国 720-320-3832

Global Down Syndrome Foundation, Centro UC Síndrome de Down y Asociación de síndrome de Down de Japón unen sus fuerzas para traducir y proveer acceso on line a las guías GLOBAL para el cuidado de salud de Adultos

Denver –29 de diciembre 2022 – Hoy, Global Down Syndrome Foundation (GLOBAL), publicó las versions en Español y Japonés de la Guía sobre el Cuidado Médico de Adultos con síndrome de Down (Guía Global del Adulto) en colaboración con el Centro la Universidad Católica de Chile (Centro UC síndrome de Down o CUCSD) y la Asociaciación de síndrome de Down de Japón (JDSA).

La guía GLOBAL de Adultos es la primera guía basada en evidencia para adultos con síndrome de Down y fue publicada en inglés en la revista JAMA, del inglés Journal of the American Medical Association, en el 2020. Los autores de la guía son directores de las clínicas más grandes de síndrome de Down en los Estados Unidos, y los nueve tópicos tratados son: comportamiento, demencia, diabetes, enfermedad cardiovascular, obesidad, osteoporosis, inestabilidad atlantoaxial, enfermedad tiroidea y enfermedad celiaca. GLOBAL se encuentra trabajando en expandir los tópicos a para incluir apneas del sueño, tumores sólidos, leucemia, cuidados en visión/ojos, y terapia física y ejercicio.

Además de la guía de 80 páginas para profesionales médicos, GLOBAL también ha publicado una versión amigable para familias, mucho más corta y kits de herramientas que incluyen evaluaciones fáciles de seguir para la enfermedad celíaca, diabetes, comportamiento y chequeos anuales.

Todos estos recursos para adultos se encuentran ahora disponibles en Español y Japonés, sin costo, en la web de GLOBAL, DS-Connect®: The Down Syndrome Registry, en el sitio web de CUCSD y en el de JDSA. Las traducciones fueron posibles en parte gracias a una generosa donación del miembro de la Junta GLOBAL y propietario de los Colorado Rockies, Charlie Monfort.

“GLOBAL se complace en poder llegar a personas con síndrome de Down y sus familias que viven en los Estados Unidos y que hablan en español o japonés, con la colaboración de los Institutos Nacionales de Salud/DS-Connect®”, dice Michelle Sie Whitten, presidenta y CEO de Global Down Syndrome Foundation. “El Instituto Nacional de Salud Infantil y Desarrollo Humano Eunice Kennedy Shriver de los NIH ha sido un apoyo desde el principio. También estamos profundamente agradecidos de la Dra. Macarena Lizama directora del CUCSD, el Dr. Tamai Kunio, presidente de JDSA, y el Dr. Chisen Takeuchi de JDSA por ayudar a garantizar que estos documentos lleguen a cientos de miles de personas hablantes de español y japonés en todo el mundo”.

GLOBAL ha trabajado con el Congreso desde el año 2006 abogando por el programa de financiamiento de la investigación en síndrome de Down transversal en los NIH de los Estados Unidos y por aumentar dicho financiamiento. En diciembre de 2010, GLOBAL y los NIH coorganizaron la primera conferencia de investigación sobre el síndrome de Down centrada en registros y biobancos. Un resultado importante fue el establecimiento de DS-Connect®: Registro de síndrome de Down.

“Es muy importante para mí y para otras personas con síndrome de Down tener esto en español”, dice Yadira M. Carrillo, una autogestora y empresaria de 27 años que tiene síndrome de Down. “¡Necesito saber cómo cuidarme como adulta!”

“Ver la guía en español se siente como si GLOBAL valorara a las familias hispanoparlantes como la mía”, dijo Yadira Carrillo, madre de una hija de 27 años que tiene síndrome de Down. “El idioma es una barrera que enfrentan algunas familias para recibir atención médica y sé que esto ayudará a muchas personas en los EE. UU. e internacionalmente”.

En Chile, GLOBAL ha estado trabajando en estrecha colaboración con la Dra. Lizama en muchos proyectos, incluida la creación de la versión en español de la Guía GLOBAL y el recurso COVID-19 y síndrome de Down.

“Lo que Michelle, Bryn Gelaro y su equipo han logrado en investigación y atención médica es muy importante”, dice la Dra. Macarena Lizama, directora médica del Centro de la Universidad Católica de Síndrome de Down en Chile. “Nos sentimos honrados de colaborar con GLOBAL en este recurso transformador y mejorar la equidad médica, especialmente para los países de habla hispana donde el acceso a la atención médica y los recursos básicos para las personas con síndrome de Down pueden ser muy escasos. Estaremos muy orgullosos de utilizar este recurso en nuestra práctica clínica y compartirlo con colegas y familias”.

El Dr. Tamai Kunio se hace eco de este sentimiento: “Estamos agradecidos por la colaboración que hemos tenido con GLOBAL y tener este importante recurso en japonés es un sueño hecho realidad. Mi hija y miles de adultos japoneses con síndrome de Down seguramente se beneficiarán. Esperamos trabajar con GLOBAL y agregar nuevas áreas médicas en los próximos años”.

Actualmente, GLOBAL está trabajando con los Ministerios de Salud de Chile y Japón para que las pautas estén disponibles de forma gratuita y que se puedan ser encontradas fácilmente en sus páginas web sobre discapacidad.

 Para obtener más información sobre la Guía GLOBAL para adultos y descargar su copia hoy, visite www.globaldownsyndrome.org/medical-care-guidelines-for-adults/

Para obtener más información sobre la Fundación Global para el Síndrome de Down, visite www.globaldownsyndrome.org

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Sobre Global Down Syndrome Foundation

La Global Down Syndrome Foundation (GLOBAL) es la organización sin fines de lucro más grande de los EE. UU. que trabaja para salvar vidas y mejorar drásticamente los resultados de salud de las personas con síndrome de Down. GLOBAL ha donado más de USD$32 millones para establecer el primer instituto de investigación del síndrome de Down que apoya a más de 400 científicos y más de 2.200 pacientes con síndrome de Down de 33 estados y 10 países. Trabajando en estrecha colaboración con el Congreso y los Institutos Nacionales de Salud (NIH), GLOBAL es la organización de defensa líder en los EE. UU. para la investigación y la atención de personas con síndrome de Down. GLOBAL tiene una membresía de más de 100 organizaciones de síndrome de Down en todo el mundo, y es parte de una red de Afiliados: el Crnic Institute for Down Syndrome, el Sie Center for Down Syndrome,  y el University of Colorado Alzheimer’s and Cognition Center, – todos en el Anschutz Medical Campus.

 Las publicaciones médicas de GLOBAL de amplia circulación incluyen Guías GLOBAL sobre el cuidado médico para Adultos con Síndrome de Down, Información Prenatal y el Recién Nacido con Síndrome de Down y la galardonada revista Down Syndrome World^TM. GLOBAL también organiza el desfile de modas Be Beautiful Be Yourself, que es la recaudación de fondos para personas con síndrome de Down más grande del mundo. Visite globaldownsyndrome.org y síganos en las redes sociales (Facebook y Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

AVISO IMPORTANTE

Si bien el contenido de este comunicado de prensa y la Guía GLOBAL fueron desarrollados por GLOBAL y los Autores de la Guía GLOBAL, no podemos y no tenemos la intención de brindar asesoramiento médico o legal a las personas. Comuníquese con su(s) proveedor(es) de atención médica o asesor(es) legal(es) si tiene preguntas específicas sobre su historial de salud o atención individual.

Contacto de Prensa     

Anca Call                                                          
acall@globaldownsyndrome.org         

+1 720-320-3832 

Global Down Syndrome Foundation (GLOBAL) applauds Congress for including an unprecedented $15 million increase over the Fiscal Year 2022 funding level for the NIH Down Syndrome/INCLUDE research initiative in the recently passed Fiscal Year 2023 Omnibus Appropriations bill. GLOBAL has been a leading advocate for addressing the significant gap in federal research funding for Down syndrome. Based on GLOBAL’s efforts, Congress held the first ever hearing on Down syndrome research in October of 2017, which was a catalyst for the launch of the NIH INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) research initiative.

“We are so grateful for the growing bipartisan support in Congress that has led to significant increases in federal funding to help researchers answer important scientific questions that will improve the lives of individuals living with Down syndrome,” said Michelle Sie Whitten, GLOBAL President and CEO. “For far too long Down syndrome has been the least funded genetic disorder, and I’m so grateful for all the GLOBAL self-advocates, families and researchers who have succeeded in convincing Congress to increase funding.” 

“Researchers at the Crnic Institute for Down Syndrome have been at the forefront of international efforts to find answers addressing the unique disease spectrum that impacts individuals with Down syndrome,” said Dr. Joaquín Espinosa, Executive Director of the Linda Crnic Institute for Down Syndrome. “These funds will help advance scientists’ understanding of cancer, Alzheimer’s disease, and autoimmune disorders that disproportionately impact individuals with Down syndrome.”

GLOBAL thanked everyone in Congress who supported these efforts and are continuing to help increase Down syndrome research funding as we enter the new 118^th Congress in January. Specifically, GLOBAL thanked House Appropriations Committee Chair Rosa DeLauro (D-CT), Representatives Katherine Clark (D-MA), Josh Harder (D-CA), Barbara Lee (D-CA), Mark Pocan (D-WI), Lois Frankel (D-FL), Cheri Bustos (D-IL), Lucille Roybal-Allard (D-CA), Bonnie Watson Coleman (D-NJ), and Brenda Lawrence (D-MI), along with Senators Patty Murray (D-WA), Patrick Leahy (D-VT), Richard Shelby (R-AL), Mitch McConnell (R-KY), Susan Collins (R-ME), Lisa Murkowski (R-AK), Roy Blunt (R-MO), Chris Van Hollen (D-MD), Chris Murphy (D-CT), Shelley Moore Capito (R-WV), Jerry Moran (R-KS), Chuck Schumer (D-NY), and Dick Durbin (D-IL).

GLOBAL is at the forefront of research, medical care, education, and advocacy dedicated to significantly improving the lives of people with Down syndrome. To learn more, please visit www.globaldownsyndrome.org. 

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Contacts:

Kevin Brennan                                                         Anca Elena Call

202-253-0924                                                          720-320-3832   
kbrennan@bluebird-strategies.com                        acall@globaldownsyndrome.org

We are shocked and deeply saddened by the tragedy and senseless act of violence committed early this morning in Colorado Springs. At GLOBAL we believe ALL people, regardless of their sexual orientation, race, ability or differences, deserve a safe and equitable place in this world – and we condemn any and all acts of hatred. We stand with the LGBTQ and Colorado community today and our hearts and prayers go out to everyone impacted by this horrific tragedy.

“Darkness cannot drive darkness; Light can do that. Hate cannot drive out hate; Love can do that.” – Martin Luther King

GLOBAL DOWN SYNDROME FOUNDATION RAISES CRUCIAL AWARENESS AND $2.2 MILLION AT MARQUEE BE BEAUTIFUL BE YOURSELF FASHION SHOW

In-person return of annual event attracts over 1,400 guests from 18 states and 6 countries, raising funds for life-saving and transformative Down syndrome research and medical care

DENVER, CO November 13, 2022 – Last night, Global Down Syndrome Foundation (GLOBAL) raised $2.2 million at their Beautiful Be Yourself Fashion Show, held at the Sheraton Denver Downtown Hotel. Now in its 14^th year, GLOBAL’s marquee event is the largest fundraiser for Down syndrome in the world and has now raised a cumulative over $26 million.

To kick off the night, acclaimed film and television actress Christina Ricci; actor Eric Dane; Grey’s Anatomy actors Caterina Scorsone, ER Fightmaster, Alexis Floyd, Midori Francis, Anthony Hill and Niko Terho; actor John C. McGinley; actor, author & social media influencer Josh Peck; model, actress and investor Brooklyn Decker; actor Zack Gottsagen; actor Sheree J. Wilson; former Colorado Rockies player and Color Analyst Ryan Spilborghs; and Colorado Rapids player Gyasi Zardes hit the red carpet in support of critical Down syndrome research and medical care funding. Beloved and award-winning 9NEWS Anchors Kim Christiansen and Tom Green emceed the event.

“My aunt is differently abled, so this cause is near and dear to my heart,” said actress and investor Brooklyn Decker. “What GLOBAL is doing is incredible. As the biggest research center in the world for individuals with Down syndrome, they’re leading the conversation surrounding the importance of inclusion of the differently abled community.”

“I feel so embraced by the whole Grey’s Anatomy family,” said actress Caterina Scorsone of her castmates joining her at GLOBAL’s Be Beautiful Be Yourself Fashion Show. “It means so much to me that they would come all the way to Denver, Colorado to support GLOBAL, educate themselves, and spread the word about the importance of advocating for the foundation’s cause.”

Later in the evening Denver Broncos cheerleaders McKenna and Mikayla joined the line-up and rocked the runway, which featured 22 brilliant and beautiful models who happen to have Down syndrome.

These celebrities joined GLOBAL in honoring the 2022 Quincy Jones Exceptional Advocacy Award (Quincy Jones Award), recipients and stars, David Egan and Eric Dane. Dane, known for his roles as Dr. Mark Sloan on ABC’s hit drama series Grey’s Anatomy, and more recently as Cal Jacobs on the highly acclaimed show Euphoria is a dedicated philanthropist and advocate for people with Down syndrome. Egan, an internationally renowned athlete, author and self-advocate, has Down syndrome himself. While accepting his award, Egan shared this with the crowd. “Let us dream of a world where people are fully included.  A world where people ‘live long and prosper’. Living long is not enough, we need to prosper, and the quality of our lives does matter. GLOBAL understands our condition and promotes the quality of our lives. Let us make sure that we are not guided by the myth of limitations, but rather open to possibilities and abilities. We have come far but still have far to go.”

“Michelle and her team at GLOBAL work hard to change the lives of people with Down syndrome for the better,” said Dane in his acceptance speech. “I am SO amazed by how they managed to quadruple the government funding for Down syndrome research in 10 short years. Imagine the impact this funding will have not only on people with Down syndrome, but to all of us: even if you don’t know a person with Down syndrome, you likely know someone affected by Alzheimer’s disease or cancer. Tonight, with your support, we are ALL contributing to the betterment and advancement of humankind.

Global Down Syndrome Foundation Ambassadors Walt Snodgrass (L) & Lou Rotella (R) and actress Caterina Scorsone on the runway 

Photo courtesy of Global Down Syndrome Foundation – Jensen Sutta

Amanda Booth, supermodel, actress, Quincy Jones Awardee and mother to 2022 GLOBAL Ambassador Micah, served as the Event Chair. In addition to supporting eight-year-old Micah, Booth helped celebrate the return of Quincy Jones Awardees Zack Gottsagen and Tim Harris; and GLOBAL Ambassadors Clarissa Capuano, Chase Turner Perry, Lou Rotella IV and Walt Snodgrass. She said: “Not only does tonight present us with an opportunity to raise lifesaving funds for the groundbreaking research that Global and the Crnic Institute are able to do, but we also get one heck of a runway show! As someone who has had the privilege of walking quite a few runways, I have to say, being backstage at this fashion show is better than any I’ve ever experienced!”

“What excites me most about this year’s Be Beautiful Be Yourself Fashion Show is that we’re   continuing to deliver on our mission by elongating life and improving health outcomes of people who have Down syndrome,” said GLOBAL President and CEO Michelle Sie Whitten. “David Egan and Eric Dane are this year’s recipients of the Quincy Jones Exceptional Advocacy Award, and they are both so deserving as they continue to take advocacy for the Down syndrome community to a new level.”

Past event chairs include Lou III and Jill Rotella, Tom and Michelle Whitten, Kacey Bingham and Brittany Bowlen, Peter Kudla, Maureen Regan Cannon, Anna and John J. Sie, Sharon Magness Blake and Ernie Blake, Ricki Rest, Nancy Sevo.

Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show help underwrite life-changing and life-saving research and medical care at GLOBAL’s affiliates – the Crnic Institute for Down Syndrome and Rocky Mountain Alzheimer’s Disease Center, both at the Anschutz Medical Campus, and the Sie Center for Down Syndrome at Children’s Hospital Colorado.  The fashion show would not be possible without the generosity of GLOBAL’s Leadership circle, sponsors, Ambassadors, Q-Awardees, models, Down syndrome partner organizations, celebrities, self-advocates and families.

Missed the event? It’s not too late to get involved! See photos from the event and read all the top media coverage.

To learn more about the Be Beautiful Be Yourself Fashion Show or to donate, visit bebeautifulbeyourself.org

To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

About Global Down Syndrome Foundation 

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,200 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. 

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

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Experience the Largest Down Syndrome Fundraiser in the World

DENVER – November 9, 2022 – Today the Global Down Syndrome Foundation (GLOBAL) announced a star-studded line-up for its annual fundraiser, the Be Beautiful Be Yourself Fashion Show. Celebrity headliners include Christina Ricci, acclaimed film and television actress; John C. McGinley, award-winning film and TV actor; Josh Peck, actor, author & social media influencer; Brooklyn Decker, star of Netflix’s Grace and Frankie, and former Sports Illustrated and Victoria’s Secret model; Zack Gottsagen, star of The Peanut Butter Falcon; Sheree J. Wilson, entertainment legend and actress having starred in Dallas and Walker, Texas Ranger; Amanda Booth, model and actress; and Eric Dane and Caterina Scorsone, beloved actors from the longest primetime TV drama on ABC, Grey’s Anatomy.

An impressive number of Scorsone’s colleagues from Grey’s Anatomy will be in attendance to support GLOBAL: E.R. Fightmaster, Alexis Floyd, Midori Francis, Anthony Hill, and Niko Terho.

Local celebrities are also providing tremendous support: Brandon McManus, Denver Broncos Kicker; Troy Guard, renowned chef and restauranteur; Bill Hanzlik, former Denver Nuggets Forward and Coach; Gyasi Zardes, star forward for the Colorado Rapids; Ryan Spilborghs, former Colorado Rockies and current analyst and commentator; Kim Christiansen and Tom Green, award-winning 9NEWS anchors who will emcee the event; and McKenna and Mikayla, Denver Broncos cheerleaders.

“We are deeply grateful to our celebrities – some, such as Caterina Scorsone and John C. McGinley, have children with Down syndrome, some, such as Zack Gottsagen, are self-advocates, and all of them understand that we have to fight for equity for our children and adults,” says GLOBAL President and CEO, Michelle Sie Whitten. “This event allows us to fund science and medical care that is elongating life and improving health outcomes. This is only possible with support from our amazing donors, Congressional and NIH Champions, passionate self-advocates and families, and our brilliant researchers and medical professionals.”

The Be Beautiful Be Yourself Fashion Show will be held in-person on Saturday, November 12 at the Sheraton Denver Downtown Hotel. Tickets and Model Sponsorships are still available for this award-winning and internationally renowned event. The evening will feature two Quincy Jones Exceptional Advocacy Awards presented to Eric Dane, and to the extraordinary self-advocate and author, David Egan; recognition of GLOBAL’s 2022 Ambassador Micah Quinones; exclusive silent and live auction items; a sumptuous reception and sit-down dinner; and the inspiring fashion show featuring celebrities and 22 beautiful and brilliant models with Down syndrome.

The event is the largest Down syndrome fundraiser in the world with over 1,400 attendees. The proceeds go to GLOBAL’s life-saving research and medical care through its affiliates – Linda Crnic Institute for Down Syndrome, CU Alzheimer’s and Cognition Center, and Anna and John J. Sie Center for Down Syndrome, all on the Anschutz Medical Campus.

GLOBAL depends on fundraising and fundraisers to ensure that Down syndrome does not remain as one of the least funded genetic conditions by the National Institutes of Health (NIH). Donation proceeds support GLOBAL’s lobbying Congress and outreach to NIH which has resulted in nearly $200 million in additional funding to Down syndrome research over the last five years – from $37 million in 2017 to $115 million in 2022.

Various levels of Be Beautiful Be Yourself Fashion Show tickets, table sponsorships, and model sponsorships are available, including VIP levels at www.bebeautifulbeyourself.org.

For more information on the Global Down Syndrome Foundation, please visit www.globaldownsyndrome.org.

For celebrity interviews, additional information, imagery, or to cover the Be Beautiful Be Yourself Fashion Show, please contact trishdavis0707@gmail.com.

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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 2,200 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. 

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

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PRESS CONTACTS:

Trisha Davis, trishdavis0707@gmail.com, C: (818) 640-9259

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