When it comes to rare disease advocacy, just keep showing up

According to the EveryLife Foundation for Rare Diseases, more than 30 million Americans live with at least one rare disease. Considering that’s nearly 10% of the U.S. population, these diseases don’t seem so rare after all.

For decades, the disability rights movement has fought for the rights of this population, advocating for greater accessibility and equality in education, public buildings, transportation, housing, employment, health insurance, and more. All of this grew out of a desire for people with disabilities and rare diseases to be seen and heard, to have a place in society, and to have the same opportunities as everyone else to pursue happiness.

As I grow older with limb-girdle muscular dystrophy, I have learned many lessons from the people who began the disability rights movement. One of their most important messages is often overlooked: Keep showing up.

I keep showing up by writing these columns. I keep showing up by sharing my views on my blog. I keep showing up on social media by posting about what quality of life means to me as a power wheelchair user. I keep showing up by doing advocacy work, and I keep showing up in Washington, D.C.

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Lobbying our elected officials

Every March, my wife and I travel from our home in New Hampshire to Capitol Hill to meet with our elected members of Congress. We do this with over 100 patient advocates from across the country. Our congressional asks are similar each year: to educate members and their staff about what life is like with muscular dystrophy, to secure funding for research and care, and to advocate for progressive language in proposed disability bills.

This may seem like a daunting task that requires training, but it’s not. Our group of advocates is organized by Parent Project Muscular Dystrophy, a nonprofit, and coached by a health lobbying firm based in D.C. Those groups do the heavy lifting in terms of researching what Congress is currently working on in the area of rare disease.

The timing of Rare Disease Month in February coincides with the beginning of the federal budget process, which is why I, and so many others living with rare diseases, travel to advocate at this time of year.

I urge you to get involved in advocacy as well. You don’t need to travel far from home; you can contact your elected official’s office via phone or email, or request a meeting when they are in their district. Political affiliation doesn’t matter — you are simply there to tell your story and keep the rare disease community’s needs on their radar. You will feel a sense of pride and accomplishment knowing you have advocated for yourself or a loved one.

The more people who are educated about disability and rare diseases, the better. Keep showing up!

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.