Archive for May, 2020

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’s Dare to Ride Team for the 2020 Courage Classic VIRTUAL bike tour on July 18-19! Courage Classic is an annual fundraiser for Children’s Hospital Colorado, and GLOBAL’s Dare to Ride Team designates its funds to the Anna and John J. Sie Center for Down Syndrome at the hospital.

COVID-19 UPDATE: After careful consideration, Children’s Hospital Colorado Foundation has decided to transition this year’s Courage Classic bicycle tour to a virtual celebration. While we were hopeful this year’s Courage Classic would take place as usual in Copper Mountain, we agree that this is the best option given the current public health landscape.

Please consider supporting our Dare to Ride Team in one or more of the following ways:

1. Join our Virtual Team
• Our Dare to Ride Team consists of self-advocates, family members, and community supporters who are passionate about supporting medical care for children with Down syndrome.
• Fueled by their network of supporters, each rider contributes to our team goal of $50,000 through online peer-to-peer fundraising. There is no registration fee for 2020.
• This year’s tour format broadens the possibilities of participation – You can ride, spin, run, hike, walk, and more while social distancing outside or staying in, all to support the Sie Center! Register today!

2. Donate to the Team

• Cheer on those who are going the distance with a gift of $10, $25, $50, or $100! Any amount, small or large, has a great impact on our community.
• Visit our Dare to Ride Team webpage to ensure that all funds raised support the Sie Center.
• Support a specific rider or the team as a whole

THANK YOU! The Sie Center is part of the GLOBAL family and provides the highest standard of care to pediatric patients with Down syndrome from 28 states and 10 countries.

• Fastest growing pediatric medical care center for children with Down syndrome based at the top ten children’s hospital, Children’s Hospital Colorado.
• Provides best clinical care and therapeutic intervention to over 1,800 patients.
• Largest number of pediatric clinics of any Down syndrome facility in the U.S., including: Mental Wellness, Medical Care, Infant Care, Telemedicine, School Age/Education, Sleep, ENT, and Feeding and Swallowing.
• Largest number of pediatric clinics of any Down syndrome facility in the U.S., including: Mental Wellness, Medical Care, Infant Care, Telemedicine, School Age/Education, Sleep, ENT, and Feeding and Swallowing.
• Collaborative and ground-breaking research on co-occurring conditions in children with Down syndrome such as aspiration and dysphagia (swallowing difficulties).
• Other specialties offered range from physical, speech and occupational therapy, to education advocacy.

If you have any questions, please contact events@globaldownsyndrome.org or 720-548-5619.

100% of the proceeds will go to the lifesaving and life-changing care at the Sie Center.