Jean Walsh reflects on the power of rare disease advocacy — from local efforts in Massachusetts to national legislative campaigns. She shares how working with organizations such as RDLA, FARA, and NAF has helped her find strength in numbers and purpose in action. Read more in her column Defining Yourself.
Transcript
My name is Jean Walsh. I have Friedreich’s ataxia or FA.
I think, like, broadly speaking, all of us with rare diseases have to do advocacy — either with your doctor who’s never heard of your disease, or your neighbor who wants to find out what’s going on, or where you’re out and about in the community.
In my case, I really like to advocate for legislation with the government. I do it through the organization RDLA, which is Rare Disease Legislative Advocates.
I really like it because for FA, there’s approximately 6,000 of us living in the country, but there are 3 million people with rare diseases living in the country. So if we team up with rare disease advocacy, we’re a lot more powerful as a constituency.
The other part is, my patient organization, Friedreich’s Ataxia Research Alliance, or FARA as we call them, has teamed up with the National Ataxia Foundation, and we do a day of lobbying, and again, the numbers are more potent if we do it together.
So I really also enjoy local advocacy in Massachusetts. Pretty much every city has a disability advocacy-like volunteer organization.
I also really feel like I am a beneficiary of all that people have done to pass the Americans with Disabilities Act. It’s really important to me to keep on paying that forward. Or, as is sometimes the case right now, making sure that the advocacy that they already did continues to pay off for us.
And then I just think that advocacy personally makes you feel so empowered over your disease. And especially when you’re doing it with RDLA or with FARA and NAF — in those joint things, it’s like so many people advocating for the same thing that you’re advocating for.
And it’s important to never forget that — the legislators, local, federal, state — they work for you. You elect them; they work for you. It’s OK to ask them for stuff.
Find out what your patient organization already does. That is a really great way to go when you have a rare disease. And then I’ve learned a ton from, like, going to RDLA webinars. They help you understand what specific legislation means.
You might not have the resources to go to their Washington Week, but if you do — definitely do it. It’s super fun and amazing to meet all the other rare disease advocates.
And you can actually meet a lot just online — just making sure that people know that’s what you are — and learn from them.