Celebrating Women in FSHD: International Women’s Day 2025
In honor of International Women’s Day, join us in celebrating many of the amazing women advancing research and creating community for folks living with FSHD. Thank you to these phenomenal advocates. We are grateful for your time, energy, care, and commitment.
Ranae Beeker, Women On Wellness (WOW) Facilitator & Rockstar Volunteer
Ranae Beeker, RN, is the unsung hero of FSHD health advocacy and activism. In 2024 alone, Beeker:
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- assisted the FSHD Society with updating an important Medic Alert Card and our Fall Vaccination Guide,
- reviewed and augmented our Clinician spreadsheet in preparation for the new Care Connector tool,
- regularly contributed to the FSHD Society blog,
- joined the FSHD Navigator initiative as a volunteer, and
- facilitated more than 10 Women on Wellness meetings.
Soft-spoken yet outspoken, and incredibly conscientious, Beeker has touched the lives of so many folks living with FSHD.
Mary Beth McCabe, Jersey Shore Walk & Roll Leader
Mary Beth McCabe is the passionate Captain of Team McCabe and Leader of the New Jersey Shore Walk & Roll. Once diagnosed, McCabe leapt into action, volunteering locally and starting a Walk & Roll for the Jersey Shore. Her first Walk & Roll survived a hurricane, nevertheless becoming a successful fundraiser. Not one to let FSHD limit her abilities, when called to volunteerism McCabe said, “I never thought to say no.”
Watch her entire interview on our YouTube Channel.
Marisa Spain, Everything Early Onset Facilitator, YouTube Personality & Disability Rights Advocate
Marisa Spain has a knack for making everyday advocacy both fun and impactful. Based in southeastern Michigan, Marisa brings fresh energy to accessibility awareness with her unique YouTube channel, Disabled in Nature.
In addition to her work online, Marisa also co-leads the Everything Early Onset Zoom group alongside Archer Sverdrup, creating a safe, open space for people of all ages who were diagnosed with FSHD early in life. “The best thing we can do for each other right now is to build a strong community,” she reflects, acknowledging how the group meets both practical needs and the emotional support crucial for living with FSHD.
Read our full profile of Marisa on the FSHD Society blog. Watch and subscribe to her YouTube Channel.
Debbie & Maggie Eggleston, Fearless Advocates for Youth & Families
Mother-Daughter duo Debbie & Maggie are a true powerhouse when it comes to raising awareness about and creating research space for Early Onset FSHD. In early 2024, Maggie & Debbie travelled to Washington DC, participating in our first ever “Hill Day.” While in DC, they connected with Rep. Debbie Dingell, who helped introduce a bill recognizing June 20th as World FSHD Day in the United States. Maggie and Debbie also provided powerful testimony for the Fall 2024 Listening Session with the FDA, an important meeting educating the USA’s largest regulatory body about FSHD’s relentless progression. Debbie and Maggie regularly travel to clinical conferences and research centers educating researchers and clinicians on the importance of expanding trial criteria and drug access for pediatric and geriatric FSHD patients.
Debbie & Maggie’s efforts are a powerful reminder of how advocacy can create change and amplify awareness for FSHD.
Michaela Walker, Project Manager for the Clinical Trial Research Network
Michaela Walker, MPH works as a project manager for Dr. Jeffrey Statland in the Dept. of Neurology at the University of Kansas Medical Center. She manages and coordinates dozens of muscular dystrophy and neuromuscular research studies. Her job is to educate and inform patients of developments in the field and all research opportunities. Michaela serves as a Project Manger for the FSHD CTRN and the MOVE+ FSHD study at the University of Kansas. She says the most rewarding part of her work is “Getting to meet patients and hearing their stories. Also, seeing the work we have done come to fruition and being used by researchers and industry partners across the globe.”
Women On Wellness, Gathering Place Group:
Women on Wellness, or W.O.W., is our mutual support and social group for women of all ages who are living with FSHD. We created this women-only space to discuss health, self-care, and any other topics that we find easier to discuss with other females.
Our group is hosted and facilitated by a group of volunteers. We may suggest articles and conversation-starters to get each meeting going, but this is truly your space to share what’s on your mind.
W.O.W. meets First Wednesday of every month at 5:00 pm ET/2:00 pm PT.
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