Workshops

A 90-minute dive into the basics of understanding clinical research, developed specifically for self-advocates and caregivers who want to learn more about Down syndrome research in general, how to read and use research articles, and how to approach research-related conversations with your healthcare professional.

• Begin exploring how to understand and evaluate research
• Develop critical thinking skills around research
• Get more comfortable with the format and tone of scientific articles

Over 95% of individuals with Down syndrome in the U.S. do not have access to a Down syndrome specialty clinic. Researchers at Massachusetts General Hospital and Harvard Medical School have now created “Down Syndrome Clinic to You” (DSC2U) as a way to bring the latest advances in health and wellness for people with Down syndrome directly to caregivers’ home computers. With DSC2U (dsc2u.org), caregivers complete an online intake form, where they identify current concerns about their son or daughter with Down syndrome. Their responses generate two personalized documents: a plan for caregivers and another one for the primary care providers of their sons/daughters. Funded by a national PCORI grant, Dr. Skotko will review the efficacy and satisfaction results of more than 200 English- and Spanish-speaking families who have already used DSC2U. This workshop will include a demonstration of DSC2U so that all families feel empowered to begin using in their own homes.

Down Syndrome Regression Disorder (DSRD) is an emerging neuropsychiatric condition affecting individuals with Down syndrome in the 2nd and 3rd decade of life. This workshop will highlight the key symptoms, necessary diagnostic testing, and novel treatments for this condition.

Join us to hear from a panel of trailblazing entrepreneurs with Down syndrome who have used their unique interests, talents, and perspectives to create groundbreaking products and services. Each entrepreneur will share their story as well as the specific skills, resources, and supports that have helped them launch and sustain a successful enterprise.

In the age of smart technology, our daily routines are supported and, in many cases, automated! Morning alarm clocks can now report the days’ weather, share weekly reminders, adjust the thermostat, and even turn on the coffee pot! Learn from innovative and inspiring leaders in the disability tech space about strategies and solutions that can assist you and your loved one with Down syndrome in living your best life in 2026 and beyond!

United Dance empowers youth and young adults with Down syndrome through integrated dance education and inclusive performances. Guided by professional dancers and supported by musicians and healthcare professionals, classes foster creativity, confidence, and connection. Their performance branch, the United Dance Company, unites dancers of all abilities in acclaimed productions like The Extraordinary Nutcracker and Carnival of the Animals. With programs and workshops across the U.S., Asia, and Europe, United Dance builds community through the shared joy and artistry of movement.

When a person with Down syndrome turns 18, their legal status changes. They’re now adults—and others who work with them in education, healthcare, and other settings may ask if they can make important decisions independently. There are many legal options to consider to ensure your loved one has the supports they need as they age. In this presentation, we will discuss the legal options that are available to assist your loved one. These include guardianship (full and limited) as well as the alternatives to guardianship, including the health care proxy, HIPAA Release, medical release form, durable power of attorney, and supported decision making.

We know that individuals with Down syndrome are social beings and want to have healthy relationships. This is a skill they need to learn as it may not be inherent. In this session, parents and caregivers will learn about topics that should be addressed and how to talk about them. Resources will be shared including visual supports, books, and free online resources.

An elephant silently meandered into the field of intellectual disabilities and related disabilities, particularly among practitioners and caregivers. Even with all of the successes advocating for people with ID/RD, this elephant represented a crisis. For people with Down syndrome (DS), aging brings an additional level of concern and complexity. The aging crisis has illuminated a fundamental need to address the global needs of an aging demographic of people with DS, especially related to Alzheimer’s disease.

This session will cover topics for adults with Ds/ASD including health and wellness, behavior, day programs, vocational and residential models as well as support for caregivers. We will share personal stories and answer questions from the attendees.

In this interactive and informative session, Dr. Sarah will present an overview of the unique anatomy and physiology characteristic to the feet of people with Down syndrome. We will discuss what happens “up the chain” relative to foot posture and musculoskeletal conditions common to people with Ds. We will talk about good shoes, good foot support, and activities we can do to help the feet feel good so the body wants to move! (For all ages.)

Mindfulness and yoga are two ways to help our mind and body relax! In this workshop, we will do a few mindfulness exercises together followed by a hands-on activity to practice mindfulness! We’ll then stretch and move through a beginners yoga flow and finish with a brief meditation. Comfortable clothing is suggested.

Adults with Down syndrome who have experienced trauma may exhibit unique behaviors and symptoms that can be challenging to recognize and understand. As a caregiver, it’s not always easy to know how to best support your loved one coping with the effects of traumatic stress. In this workshop, caregivers will gain a deeper understanding of unique behaviors in adults with Down syndrome. It will explore practical strategies and evidence-informed approaches for providing meaningful support. In addition, the session will highlight helpful resources to further assist families navigating trauma-related challenges.

Transitioning from the teen years into adulthood is a complex journey—one that calls for imagination, patience, and flexibility. This interactive seminar offers practical tools and evidence-informed strategies to help you support your young adult through the many changes they’ll face—physically, socially, academically, and within the broader community. Taking a lifespan approach, we’ll guide you through 10 key domains essential to fostering a thriving, independent adulthood.

Families and self-advocates play a powerful role in shaping science. This session will explore how your voices and experiences are helping researchers better understand Alzheimer’s disease in adults with Down syndrome (DS). An NIH representative will introduce the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project, a national initiative studying co-occurring conditions that affect people with DS and the general population such as Alzheimer’s disease, diabetes, autism, autoimmune conditions, and congenital heart disease. By learning more about these co-occurring conditions and how they intersect, researchers aim to improve health outcomes and quality of life for individuals with DS throughout adulthood and aging.

A cornerstone of this effort is the ABC-DS (Alzheimer’s Biomarker Consortium – Down Syndrome) Program. To date ABC-DS has recruited and is following more than 450 adults with DS across the United States. Its crucial mission is to spot the early signs of Alzheimer’s disease in adults with DS by identifying sensitive measures of cognitive change, using blood-based proteins, metabolites, genetic biomarkers, neuroimaging, and brain features that may indicate the earliest states of the disease.

During this panel presentation, scientists will share the latest research insights on Alzheimer’s disease in DS, joined by a parent and her adult son with DS, who will offer their perspectives on participating in studies and the importance of family voices in shaping research.

Together, families and researchers are building a bridge between lived experiences and science, in order to advance knowledge, develop earlier interventions, and promote healthier futures for adults with DS.

“Join the National Down Syndrome Society, Massachusetts Down Syndrome Congress, and The Arc of Massachusetts for an empowering workshop on advocacy and the power of our collective voices. Now more than ever, it’s critical that people with Down syndrome and their families make their voices heard on policies affecting healthcare, education, research, and community supports. In this interactive session, you’ll learn:

• Why advocacy matters and how collective voices create real change
• Key policies currently being advanced at local and national levels — and why they matter to you
• How to effectively share your story with legislators to influence funding and policy decisions
• Practical steps to get involved in advocacy efforts, writing e-mails, attending advocacy events, and testifying at hearings
• How to share your family’s lived experience to advocate for broader policy goals

Whether you’re new to advocacy or a seasoned advocate, you’ll leave with concrete tools and renewed confidence to make your voice heard. Your story matters — learn how to use it to shape a better future for people with Down syndrome and their families.”

People with Down syndrome are living longer and healthier lives than ever before. Brian Chicoine, MD, will review the health changes that have contributed to that improvement. He will discuss some of the hurdles to continued improvement, such as the need for healthcare professionals who provide informed and respectful healthcare for individuals with Down syndrome. Dr. Chicoine will also highlight ways in which these hurdles are being addressed and can continue to be addressed in the future.

Everyone tells us to be healthy, but what does that mean? Do I have to give up my favorite foods to be healthy? Do I have to join a gym and use fancy equipment to be fit? Why would I want to change what I do every day if I’m happy and change is hard? Luckily, we can improve our health with simple changes and fun activities. Physical activity, nutrition, sleep, and emotional wellness are important for our health. Improvements in these areas will help us feel better now and when we get older. We may even be able to do activities we couldn’t do before! At this session, we will discuss the benefits of being healthy and how this improves our overall quality of life. We will learn about the recommendations for each area of health. Lastly, we will share simple and fun tips for living a healthy life!