Parents’ Roundtable Chapter

Serving Parents of Children with FSHD

The Parents’ Roundtable Chapter is led by parents who know all too well the challenges of parenting a child with FSH Muscular Dystrophy. This group was formed by parents, for parents and families, to offer support, compassion, and guidance. Our aim is to connect families, deepen community, and support FSHD families wherever they may be.

To contact us directly, please email: Parents@FSHDSociety.org

To ensure you never miss important information about early-onset FSHD or the work of the Parents’ Roundtable, click the button below to join.

Monthly Parents’ Roundtable
More About Early-onset FSHD

Parent and Family Perspectives and Advocacy

This video was created by the FSHD Parent Group to raise awareness and advocate for trials and treatments for pediatric FSHD–a more rapidly progressing form of FSH Muscular Dystrophy.

Important Info & Resources

FSHD parents’ hotline

Whether your child is newly diagnosed, or you’ve been living with FSHD for a while, sometimes you just want to speak with someone who “gets it”. If you are facing a new milestone, have hit a critical juncture in your child’s care, or are struggling to find the information or resources you need, it can help to speak with another parent who has been there. That’s what the parent hotline is all about.

While we don’t give any medical or legal advice, our group of volunteer parents can share their experience and listen, having walked a similar path.

You can call the hotline at 781-301-6060 x3000, leave a message, and one of our parent volunteers will return your call.

Find our meetings on YouTube

View the full playlist of all Parents’ Roundtable videos and more on our YouTube Channel.

Browse the latest research publications

To read recent articles about early-onset FSHD on PubMed, click here.

A guide for schools

Download this booklet for information about facioscapulohumeral muscular dystrophy (FSHD) and the impact it can have on students’ experiences during the school day.

Want to volunteer?

If you are interested in volunteering with us, please reach out to Ally Roets, Parents’ Roundtable Chapter Director, at Parents@FSHDSociety.org or by leaving a message on the hotline at 781-301-6060 x3000

Take our needs survey

As we work to build the new Parents’ Roundtable Chapter, we are not only building it for you, we want to build it with you. Thank you for taking a moment to provide us with your input on future chapter activities by completing our survey.

Chapter Director Ally Roets and Sam Ray

Ally, her son Sam, and husband Tim live in Vail, AZ with their two cats, Robinson and Joel, and dog, Cami. Ally is retired from the United States Air Force and is a substitute teacher.

Sam was diagnosed with FSHD when he was six years old, a first in their family. Since the diagnosis, they have learned as much as possible about the disease and have been avid supporters of their local MDA. They are excited to help connect FSH-affected families, forward research, and improve the quality of life for those impacted through education, action, and empowerment. They believe in the power of advocacy help to unlock a treatment and cure. Until then, they are committed to increasing awareness, supporting each other within the FSH community, and exploring opportunities to help FSH-affected individuals lead full and prosperous lives.

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