Heather

Join Pompe Alliance for our Town Hall to learn more about this topic. Use the link below to register.

us02web.zoom.us/meeting/regi...

🩺 Ever heard of the ACA Marketplace? It’s where millions find affordable health insurance—especially those with rare diseases. 💸 Premium tax credits help lower monthly costs, making care more accessible.
Learn more at the Town Hall. Use the link to register.
us02web.zoom.us/meeting/regi...

Close to 5M could become uninsured if Congress doesn’t extend subsidies, report says • Ohio Capital Journal Without congressional action, 7 million people who buy their health insurance on Affordable Care Act marketplaces would pay much higher premiums next year. Close to 5 million wouldn't be able to…

Without congressional action, 7 million people who buy health insurance on Affordable Care Act marketplaces will pay much higher premiums next year. Close to 5 million wouldn't be able to absorb the price hike and would lose coverage, a new analysis shows ohiocapitaljournal.com/2025/09/24/r...

Pompe Alliance Hosts Town Hall on Budget Impacts for Rare Disease Patients “This Town Hall is an opportunity to elevate the voices of patients and families who are too often overlooked in policy discussions, said Heather Shorten, Executive Director of the Pompe Alliance.”— H...

apnews.com/press-releas... Alliance Hosts Town Hall on Budget Impacts for Rare Disease Patients

www.wtrf.com/business/pre...

Please join us for the Pompe Alliance Town Hall, where we will be discussing how the current budget may impact rare disease patients. Use the link in the flyer to register. We currently have experts from Amicus Therapeutics and a representative from Congresswoman Shontel Brown's office on the panel.

In late-onset Pompe, switch to Pombiliti + Opfolda boosts... Researchers analyzed PROPEL data to assess the outcomes of 65 patients who switched to Pombiliti + Opfolda and 30 who remained on Lumizyme.

pompediseasenews.com/news/late-on...

NO KINGS Cleveland · No Kings **In America, we don’t put up with would-be kings.** Join MTV NEO, CDWC, and Indivisible NEO in Cleveland to protest authoritarian excess and degradation of the rule of law. The rally will begin at...

I'm attending No Kings's event, “NO KINGS Cleveland” - sign up now to join me! www.mobilize.us/nokings/even...

'Lab Leak,' a flashy page on the virus' origins, replaces government COVID sites The new page emphatically promotes a theory that many scientists question. Meanwhile, basic information about COVID testing and vaccines has disappeared.

www.npr.org/sections/sho...

Today is International Pompe Awareness Day and I would like to thank Fernando in Bogota Columbia for sharing what it’s like for him to live with Pompe Disease. #PompeAlliance #PompeAwarenessDay International Pompe Association (IPA)

MYTH: People who receive food stamps don’t work. FACT: You are browsing the internet instead of working right now.

Food Stamps: Myth Vs. Fact
theonion.com/food-st...

it's working, keep going

There’s still time to buy tickets to the Pompe Alliance fundraiser. Tickets are $35 and included food and wine. There will be a silent auction with great prizes including tickets to the Rock and Roll Hall with dinner. Use the link in the announcement to buy tickets or contact me directly.

Today is Rare Disease Day, please help us raise awareness by wearing the colors blue, pink, purple or green. Please share your pictures to social media with the #RareDiseaseDay2025. Today is a Meta blackout, but rare disease effects 30 million Americans and we need your support now more than ever.

February 28th is Rare Disease Day!

FDA, NIH Cancel Rare Disease Day Event in Washington Amid Political Turmoil With only a week to go until Rare Disease Day 2025, the federal government has shut down its flagship Feb. 27-28, 2025, event in Washington, DC—sparking

www.rarediseaseadvisor.com/news/amid-po...

If you live near Baton Rouge, LA here’s a #RareDiseaseDay event to attend.

17 States Sue To End Protections For Students With Special Needs The suit challenges a Biden administration decision that considered "gender dysphoria" a disability and goes even farther in questioning assistance for students.

If you live in one of these states contact your representatives and tell them to drop the lawsuit.
TEXAS,
ALASKA,
ALABAMA,
ARKANSAS,
FLORIDA,
GEORGIA,
INDIANA,
IOWA,
KANSAS,
LOUISIANA,
MISSOURI, MONTANA,
NEBRASKA,
SOUTH CAROLINA,
SOUTH DAKOTA,
UTAH, and WEST VIRGINIA,

Rare Disease Day is February 28th

Grace Wisher: The Black Girl Who Helped Stitch the Star-Spangled Banner | Origins Grace Wisher, a free-born Black girl from Baltimore, Maryland, helped stitch the Star-Spangled Banner during the six-year apprenticeship she began with white flag-maker Mary Pickersgill around 1810.

origins.osu.edu/read/grace-w...
This is why Black History Month matters. Black history is American history!

Presymptomatic Juvenile Patients With LOPD May Benefit From Routine Monitoring Routine monitoring of presymptomatic juvenile patients with LOPD is important for disease management and timely initiation of ERT, a study found.

www.rarediseaseadvisor.com/news/routine/

It’s Black History Month

Rare Disease Day is February 28th.

February is Black History Month!

www.einpresswire.com/article/7808...
Please take a look at this article on research that Pompe Alliance is conducting regarding mental health needs within the Pompe community. My colleagues and I will be presenting on our findings next week during the WORLD Symposium.

Every year at this time my nails are blue until the end of February for Rare Disease awareness. 1 in 10 Americans live with a rare disease, so chances are someone you know lives with a rare disease. You can help your friend or loved one by urging your representatives to support funding for NIH.

Cell lines need constant care.

Research protocols need constant supplies in some cases to maintain safety. Like biohazard supplies.

This is irresponsible.

Pompe Alliance will have a poster presentation at the WORLD Symposium, I’m the fifth person listed on this page.

I’m excited to announce that Pompe Alliance will have a poster presentation at the WORLD Symposium!
I will be at the poster on February 5th from 3:30 to 5:30. Please stop by to learn more about our research on mental health in the Pompe community.

Pompe Alliance is proud to host these wonderful organizations in an informative webinar. Use the link below to register.

us02web.zoom.us/meeting/regi...