Jean Walsh

Please Restore the Federal Newborn Screening System EveryLife Foundation for Rare Diseases

Sign EveryLife Foundation’s call to restore the federal #newborn screening system. Treatable conditions can be quickly identified in newborns so they can get the medical interventions they need BEFORE they show signs of illness. #raredisease #resist #medsky

Air travel with my service dog is well worth the planning Air travel with her service dog, Wendy, is a useful pleasure that works better with planning, columnist Jean Walsh writes.

Traveling in a wheelchair and with a service dog can be difficult, but is rewarding. #servicedog, #ecadgrad, #disability, #raredisease, #friedreichsataxia, #chronicdisease
#bionews
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The privilege and hardships of growing older with FA Having a degenerative disease like FA is different from the typical losses that growing older entails, writes columnist Jean Walsh.

It’s a privilege that’s hard to grow older with a rare disease or any chronic disease. #raredisease #chronicdisease #friedreichsataxia #aging #friedreichsatxianews #bionews

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Making a stand with the many Rare Disease Day advocates Columnist Jean Walsh has benefited from making a stand with other advocates on Rare Disease Day and throughout the year.

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So many ways to be a rare disease advocate…
#friedreichsataxianews #bionews #advocacy #raredisease #rarediseaseday

Thanks!! I’ll find your post.

Lauren, I just got an email that the NIH/FDA rare disease day is canceled. Is that for real? I get why it might be, but I hope it’s not canceled.

You’ll be great

All the best Lauren! I will be listening.

Thanks Lori from one of your constituents with a #raredisease

YouTube video by Senator Elizabeth Warren Donald Trump and Elon Musk are trying to cut funding for cancer and rare disease research.

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Thanks @warren.senate.gov for supporting me in MA and the estimated 30 million of us with rare disease in the US!!

Thanks for sharing!!

Thank you for standing against this! I stand (in MA) with the 30 million #RareDisease patients who need cures that NIH funded research drives.

When losing our abilities to FA, the feeling of grief is real Grief is real whether it's for a lost function or for a lost loved one, columnist Jean Walsh has found in her life with FA.

Sometimes my #RareDisease, #ChronicDisease, #ProgressiveDisease loses cause a lot of frustration that is actually an expression of grief.

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