MassGeneral Hospital Down Syndrome Program

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MassGeneral Hospital Down Syndrome Program

We are a collaborative, multidisciplinary team, serving people with Down syndrome of all ages.

We provide evidence-based clinical care, education, and cutting-edge research so that individuals with Down syndrome can reach their full potential. We are a subspecialty program in the Division of Medical Genetics. Originally started in 2006 as a clinic for adults with Down syndrome, the clinic was expanded in July 2012 to serve patients of all ages! Want to learn more about our Program?
- Twitter: http://twitter.com/MGHDownSyndrome
- Newsletters: http://goo.gl/hXDPfI

07/29/2025

Does your son or daughter with Down syndrome have trouble wearing a CPAP mask for the treatment of severe obstructive sleep apnea (OSA)? We are doing a research study to see if placing a surgically implanted nerve stimulator to treat OSA significantly improves the neurocognition and expressive language skills in people with Down syndrome, ages 10-21. This device has already been tested and FDA-approved for use in adults with moderate to severe OSA who are unable to use CPAP. If you are interested in learning more about this research study, and whether or not you/your child would be an appropriate candidate, please contact the research team by calling Dr. Hartnick at (617) 573-4206 or by e-mail at Christopher_Hartnick@meei.harvard.edu.

07/27/2025

Do you wonder how your baby learns to move? Or when they will achieve milestones like crawling and walking?

In the pursuit to answer these questions, researchers at Boston University’s Infant Communication Lab are looking to better understand the everyday movements and activities of infants with Down syndrome and track their motor skills over time. This study is entirely observational and an important first step toward allocating resources and developing interventions designed to boost mobility for infants with Down syndrome. Your voluntary participation will help make this study a success!

07/25/2025

Our team touched down in Dallas, TX last night for the National Down Syndrome Congress Convention and the Down Syndrome Medical Interest Group - USA Symposium!

We hit the ground running with presentation and panels. Look for us and say hi if you are here! 👋

07/11/2025

Don’t have a Down syndrome specialty clinic nearby? You can get the latest health and wellness information online from Down Syndrome Clinic to You (DSC2U.org), created by Dr. Brian Skotko, Mass General Hospital Down Syndrome Program, and Harvard Medical School.

Sign up at DSC2U.org/plans (link in bio!)

07/10/2025

Do you or a loved one have Down syndrome? Consider taking part in a clinical study testing an investigational vaccine to help us find a treatment for Alzheimer’s in people with Down syndrome. Dementia affects many people with Down syndrome, but there is currently no treatment available.

You may be able to join the ABATE Study if you:
• Have Down syndrome
• Are between 35 and 50 years old
• Have a study partner

If interested, please complete this screening survey. For more information you and your study partner can learn more by visiting Abate-study.com or by contacting us at 617-726-6297 or researchdownsyndrome@mgh.harvard.edu.

06/26/2025

ONLY A FEW DAYS LEFT TO SAVE $20!

🎉 Special Offer Alert! 🎉

Now through June 30, 2025, get an annual subscription to Down Syndrome Clinic to You (DSC2U) for less than the cost of a single use! 💙

📌 Use promo code SUMMER2025 at checkout
💻 Unlimited access for a full year
🌍 All proceeds support our mission to keep specialty care accessible to every family

👉 DSC2u.org/plans - link in bio!

06/22/2025

🌟 Building Confidence Through Everyday Skills 🌟

Learning how to bathe and shower independently is more than just a routine; it’s a powerful step toward independence and self-confidence for people with Down syndrome.

Here are some resources from Massachusetts General Hospital's Down Syndrome Program to help walk your loved one toward independence.

🔗 https://tinyurl.com/bdf4vkux

Whether it’s mastering each step or celebrating small wins along the way, these life skills empower individuals to take pride in caring for themselves. 💪✨

Let’s support and encourage independence, one skill at a time.

06/20/2025

📢 New research out of Massachusetts General Hospital is shining a spotlight on the Down syndrome population in Canada 🇨🇦.

Led by Dr. Brian Skotko, Director of the Down Syndrome Program, the study, recently published in Genetics in Medicine, provides the first accurate estimate of how many people with Down syndrome are living in Canada, using data from 1950 to 2020.

Key findings include:
✨ An increase in the Down syndrome population from 5,138 in 1950 to 22,367 in 2020
⏳ A rise in median life expectancy from just 4 years to 59 years
🔍 A 54% reduction in births in 2020 due to prenatal screening and elective terminations

This research is critical for healthcare planning, public policy, and advocacy, especially as the Down syndrome population ages and healthcare needs evolve.

📄 Read the full study in Genetics in Medicine: https://www.sciencedirect.com/science/article/pii/S1098360025000693?dgcid=author
🗞️ Read the Q&A with Mass General Hospital: https://www.massgeneralbrigham.org/en/about/newsroom/articles/brian-skotko-study-estimates-number-of-canadians-with-down-syndrome

06/18/2025

🚨Alzheimer’s disease research needs volunteers!

Did you know that people with Down syndrome are at higher risk of getting Alzheimer’s disease as they get older? However, clinical trials of Alzheimer’s treatments have not included people with Down syndrome so far.

The ABATE Study is about Alzheimer’s disease in people with Down syndrome. It is testing whether a potential treatment can slow down memory and thinking problems. You may be able to join the study if you have Down syndrome, are aged 35-50, and have a close friend or family member who can come with you on study visits. We can supply more information, answer questions, and see if you might be able to
take part in the study.

Contact us at 617-726-6297 or researchdownsyndrome@mgh.harvard.edu., or visit Abate-study.com.

06/16/2025

The United Dance team is headed to the Big Apple. Join them June 28–29 for a two-day experience of dance, music, and art, tailor-made for participants of all abilities.

✨ Classes led by professional artists at the top of their fields
🎨 An exclusive visit and workshop at the Museum of Arts and Design
🎵 A joyful, inclusive atmosphere designed to inspire

📍 Location: New York City Center, 131 W 55th St, NYC
👥 Ages: From 10 years old (younger participants welcome, contact us!)
💵 Fee: $130
💌 Financial assistance is available, email info@uniteddance.org for details.

Spots are filling fast - don’t miss out! ➡️ uniteddance.org

Address

55 Fruit Street, Yawkey 6C
Boston, MA
02114

Website

http://www.massgeneral.org/downsyndrome

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