College is possible. Preparation is necessary.
by Wade C., FSHD Navigator
Let’s start here: college is possible for students with FSHD.
Yes, there might be some careers that aren’t realistic for people with FSHD—acrobat, coal miner, stonemason—but there are countless paths that are. Students with FSHD can absolutely achieve their academic and professional goals. The key is preparation—and starting earlier than most families expect.
This process isn’t just about getting into a dream school—it’s about being ready to thrive and succeed starting on move-in day.
College brings a level of independence that can catch families off guard. For many students, it’s the first time they’re managing their own healthcare, staying on top of medications, setting limits to avoid muscle overexertion, and communicating their needs without a parent stepping in. That’s a big shift.
And there’s another major change that often surprises people.
In K–12, the school is responsible for identifying a student’s needs and putting supports in place. In college, that responsibility shifts entirely to the student. They have to disclose their disability, request accommodations, and engage in what’s called the “interactive process” under the Americans with Disabilities Act (ADA).
IEPs and 504 plans don’t follow students to college. Instead, students need to provide medical documentation and clearly describe the accommodations they need—across academics, housing, dining, campus transportation, recreational activities, and more. Even then, not all colleges approach disability support the same way. Some are proactive and supportive. Others, less so. And when accommodations are approved, getting consistent follow-through can take persistence.
That’s why self-advocacy matters so much.
Students need time to learn how to speak up, ask questions, follow up, and problem-solve. These aren’t skills most students magically have at 18—they need to be practiced and developed over time.
High school guidance counselors can be helpful, but they’re often juggling large caseloads and may not have specialized training in supporting students with physical disabilities. Often, FSHD families find themselves figuring out college accessibility and accommodations on their own. This is in addition to the common challenges of writing college essays, researching financial aid, setting up campus visits, and more.
There are professionals who specialize in college accessibility support for disabled students, but many charge $3,000–$5,500 for college prep packages, with hourly rates of $250 or more. For families already dealing with the financial impact of FSHD, that’s simply not possible.
This is where I hope to help.
I’m a college admissions and ADA specialist, and I recently retired due to the progression of my own FSHD. I spent more than 20 years in higher education at UC Berkeley and other colleges—working with admissions, coaching students through college and medical school applications, and helping students navigate ADA accommodations.
Now, as an FSHD Navigator, I want to use that experience to support families in our community.
I can help students explore careers and colleges, build the skills they’ll need to advocate for themselves, navigate the application process, refine their college essays and other admissions materials, and prepare for a successful transition into their first semester. My goal is to make this process less overwhelming—and more empowering—for both students and parents.
If you’re just getting started, already in the midst of the college search process, or currently in college and considering career and graduate school options, I’m happy to jump in and help with anything I can. I’ll gladly share my résumé and professional reference letters.
In terms of my experience with FSHD, it’s been an ever-present part of my life, as I’m the fifth person in my family affected. I also have an unrelated genetic myopathy that exacerbates the typical FSHD muscle atrophy and fatigue. Although the combined effects of the two myopathies can be challenging, I remain committed to helping others with neuromuscular diseases.
I look forward to connecting with FSHD families virtually. You can contact me through the FSHD Society Navigator portal.
Lastly, the links below offer a starting point for learning more about college and students with neuromuscular diseases.
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