Stephanie Fischer

#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.

[Letter Carriers @NALC_National]

The nation's largest single-day food drive is less than ONE MONTH away! On Saturday, May 9, letter carriers will collect nonperishable food donations in communities across the country. Help us fill the shelves of your local food pantries by participating in the #StampOutHunger Food Drive!

[Rep. Brian Fitzpatrick 🇺🇸 @RepBrianFitz]

Each week, we share the stories of extraordinary individuals whose leadership, service, and dedication strengthen the fabric of our community. This morning, I stood on the floor of the House to honor the life and legacy of a remarkable leader, advocate, and fighter—a true hometown hero—the remarkable Anna Payne, Middletown Supervisor, whom we sadly lost this week.

A Levittown native and Neshaminy High School graduate, Anna was more than a public servant—she was a champion for her neighbors, a tireless advocate for the most vulnerable, and a fearless leader who turned her battles into a mission to uplift others. She didn’t just believe in community—she built it, strengthened it, and fought for it every day.

Diagnosed with cystic fibrosis at a young age, Anna understood struggle but refused to be defined by it. Instead, it inspired her to work tirelessly to make life better for others. Through her leadership as Vice Chair of the @PARareDisease and as the founder of the Bucks County Cystic Fibrosis Alliance, Anna gave hope to countless families and individuals in our community. As Middletown Township Supervisor, she was a fierce and effective leader, working to make our community stronger, safer, and more connected, championing initiatives that enhanced local infrastructure, protected public safety, and bettered our community.

Even after her stage-four colon cancer diagnosis in 2021, Anna never wavered in her commitment to our community. Through unimaginable adversity, she continued showing up—proving time and time again that her dedication, resilience, and heart knew no bounds. Her impact stretched far beyond the halls of government; she was a mentor, a friend, and a guiding light to all who knew her. Through her tireless healthcare advocacy, unwavering commitment to local initiatives, and extraordinary ability to unite people, Anna exemplified the best of Bucks County.

Today, we mourn the loss of a true hometown hero, but more importantly,  we celebrate a legacy that will never fade and honor a life of service and unyielding determination. Please join me in honoring Anna—a woman whose strength, service, and spirit will forever be woven into the fabric of our community.

[Dr. Heather Mefford @hcmefford.bsky.social @hcmefford]

We're looking for a talented scientist 👩‍🔬👨‍🔬to join our group @StJudeResearch! Help us develop/characterize #stemcell/#organoid models of #raredisease #epilepsy disorders. 🧠🧬🧠🧬 Details below - join us!

https://t.co/hInAwOaaIs

[Barack Obama @BarackObama]

Don’t let anyone or anything stop you from making your voice heard in this election. If you have any questions or concerns, call a voter protection hotline. These folks are standing by to make sure your vote is counted. So make sure you vote! https://t.co/2ogKA9sy3H

[Stephanie Fischer @RarePOV]

.@RareDiseases to host a webinar for parents & other caregivers of teens with #RareDiseases on February 29 at 7-8pm ET which will include mindfulness exercises plus discussions of grief, radical acceptance, boundaries & self-advocacy https://t.co/tYINokreeK. #RareDiseaseDay

[Wendy Chung @WendyKChung]

Enormously proud and honored to do this important work. ❤️

[FamilieSCN2A @FamilieSCN2A]

#SCN2A Fact of the Day
Knowledge is power, & sharing these insights, we can create a more informed & supportive community. Read, learn, & share because awareness is the first step towards understanding & change
#SCN2ADay24 #SCN2AAwareness #GlobalAdvocacy #cureSCN2A #HopeForACure

[Adventurer Inn @AdventurerInn]

📣 To WIN a FREE OCEANFRONT 2 Room Suite May 2nd-May 6th, 4 nights:
1. FOLLOW us on X.
2. Re-Tweet as many Adventurer Tweets as you want 😉.
3. LIKE this Tweet.
@Wildwood365 @wildwoodBwalk @TheWilldwoodsNJ
#wildwoodnj #nj #wildwoodnewjersey #wildwood365

Rules next Tweet

[Stephanie Fischer @RarePOV]

Love the willingness to listen to & learn from #raredisease community—> “More often than not, patient groups are teaching us,” says Jodi Rutter of @ncats_nih_gov at @EveryLifeOrg Community Congress

[Stephanie Fischer @RarePOV]

@Rakuten @lisadbudzinski

[Stephanie Fischer @RarePOV]

@Rakuten @RarelyYours

[Stephanie Fischer @RarePOV]

@Rakuten @ShopperGIRLinDC

[Rakuten @Rakuten]

💰GIVEAWAY DAY 8💰 Is there any better gift than CASH?? For a final giveaway we’re adding $250 to one lucky winner’s Cash Back balance 🤑
To enter:
-Follow @Rakuten on X
-Retweet this post
-Tag up to 5 friends in the replies (1 reply = 1 entry)

[U.S. FDA @US_FDA]

Registration is open for our #FDARareDiseaseDay event on March 1.

Join us to hear from experts on empowering patients and health care professionals with key information and working to advance medical products for rare diseases. https://t.co/UAuo3sGqQU

[Brian Wallach @bsw5020]

Two years ago @CBSSundayMorning came to our house to talk about the ALS movement.

This summer, they came back to talk about our success, our new projects and our lives.

Tomorrow morning Lee Cowan’s piece will air as part of CBS Sunday Morning. I truly hope you will watch it!

[Patient Worthy @PatientWorthy]

What is a myth or misconception about living with a #RareDisease or #ChronicIllness that you still see spread?

Let's combat the myths right here.

[Neena Nizar @NeenaNizar]

Grateful for the rare disease warriors in the space who continue to be the voice of change for so many. ♥️

[Stephanie Fischer @RarePOV]

@G17Esiason That is also awesome for any children with feeding tubes who can’t eat candy. Yeah for your wife! 🎃

[National Family Center @NGEFSC]

"People get to be angry. Our job is to be as thoughtful as possible and normalize that this process can be terrifying." - Jessica Dallman (Natural Wisdom Counseling) speaking about how #healthcare providers can support patients and families when delivering #raredisease diagnoses.