Jean Walsh
@jeantw.bsky.social
#Raredisease patient (#FriedreichsAtaxia) and advocate
Happily married
Love to be outside and garden
Happily married
Love to be outside and garden
Reposted by Jean Walsh
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
Please Restore the Federal Newborn Screening System
EveryLife Foundation for Rare Diseases
everylifefoundation.quorum.us
April 20, 2025 at 2:45 PM
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
Traveling in a wheelchair and with a service dog can be difficult, but is rewarding. #servicedog, #ecadgrad, #disability, #raredisease, #friedreichsataxia, #chronicdisease
#bionews
friedreichsataxianews.com/columns/air-...
#bionews
friedreichsataxianews.com/columns/air-...
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.
friedreichsataxianews.com
April 25, 2025 at 9:51 PM
Traveling in a wheelchair and with a service dog can be difficult, but is rewarding. #servicedog, #ecadgrad, #disability, #raredisease, #friedreichsataxia, #chronicdisease
#bionews
friedreichsataxianews.com/columns/air-...
#bionews
friedreichsataxianews.com/columns/air-...
It’s a privilege that’s hard to grow older with a rare disease or any chronic disease. #raredisease #chronicdisease #friedreichsataxia #aging #friedreichsatxianews #bionews
friedreichsataxianews.com/columns/priv...
friedreichsataxianews.com/columns/priv...
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.
friedreichsataxianews.com
March 29, 2025 at 1:04 PM
It’s a privilege that’s hard to grow older with a rare disease or any chronic disease. #raredisease #chronicdisease #friedreichsataxia #aging #friedreichsatxianews #bionews
friedreichsataxianews.com/columns/priv...
friedreichsataxianews.com/columns/priv...
friedreichsataxianews.com/columns/maki...
So many ways to be a rare disease advocate…
#friedreichsataxianews #bionews #advocacy #raredisease #rarediseaseday
So many ways to be a rare disease advocate…
#friedreichsataxianews #bionews #advocacy #raredisease #rarediseaseday
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.
friedreichsataxianews.com
February 24, 2025 at 6:04 PM
friedreichsataxianews.com/columns/maki...
So many ways to be a rare disease advocate…
#friedreichsataxianews #bionews #advocacy #raredisease #rarediseaseday
So many ways to be a rare disease advocate…
#friedreichsataxianews #bionews #advocacy #raredisease #rarediseaseday
youtube.com/shorts/xhKip...
Thanks @warren.senate.gov for supporting me in MA and the estimated 30 million of us with rare disease in the US!!
Thanks @warren.senate.gov for supporting me in MA and the estimated 30 million of us with rare disease in the US!!
Donald Trump and Elon Musk are trying to cut funding for cancer and rare disease research.
YouTube video by Senator Elizabeth Warren
youtube.com
February 16, 2025 at 3:17 PM
youtube.com/shorts/xhKip...
Thanks @warren.senate.gov for supporting me in MA and the estimated 30 million of us with rare disease in the US!!
Thanks @warren.senate.gov for supporting me in MA and the estimated 30 million of us with rare disease in the US!!
Sometimes my #RareDisease, #ChronicDisease, #ProgressiveDisease loses cause a lot of frustration that is actually an expression of grief.
friedreichsataxianews.com/columns/when...
friedreichsataxianews.com/columns/when...
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.
friedreichsataxianews.com
February 10, 2025 at 10:17 PM
Sometimes my #RareDisease, #ChronicDisease, #ProgressiveDisease loses cause a lot of frustration that is actually an expression of grief.
friedreichsataxianews.com/columns/when...
friedreichsataxianews.com/columns/when...