Heather
@hshorten.bsky.social
I was diagnosed with Pompe Disease in 2010 and have since been dedicated to advocating for issues related to rare disease. I founded Pompe Alliance in 2018, an organization that provides services to Pompe patients and their families.
Are you looking for a fun, inexpensive Christmas gift that also supports a nonprofit organization? Contact me at pompealliance@gmail.com to purchase tickets for $15 each or a donation. Hope to see you there!
December 6, 2025 at 4:49 PM
Are you looking for a fun, inexpensive Christmas gift that also supports a nonprofit organization? Contact me at pompealliance@gmail.com to purchase tickets for $15 each or a donation. Hope to see you there!
Please consider supporting Pompe Alliance on Giving Tuesday. You can use the link below to donate. Thank you
December 1, 2025 at 7:42 PM
Please consider supporting Pompe Alliance on Giving Tuesday. You can use the link below to donate. Thank you
Join Pompe Alliance for our Town Hall to learn more about this topic. Use the link below to register.
us02web.zoom.us/meeting/regi...
us02web.zoom.us/meeting/regi...
October 22, 2025 at 9:47 PM
Join Pompe Alliance for our Town Hall to learn more about this topic. Use the link below to register.
us02web.zoom.us/meeting/regi...
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...
Learn more at the Town Hall. Use the link to register.
us02web.zoom.us/meeting/regi...
October 16, 2025 at 4:04 PM
🩺 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...
Learn more at the Town Hall. Use the link to register.
us02web.zoom.us/meeting/regi...
Reposted by Heather
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...
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…
ohiocapitaljournal.com
September 24, 2025 at 9:30 PM
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...
apnews.com/press-releas... Alliance Hosts Town Hall on Budget Impacts for Rare Disease Patients
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
September 24, 2025 at 4:53 PM
apnews.com/press-releas... Alliance Hosts Town Hall on Budget Impacts for Rare Disease Patients
www.wtrf.com
September 24, 2025 at 2:01 AM
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.
September 19, 2025 at 2:57 AM
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.
I'm attending No Kings's event, “NO KINGS Cleveland” - sign up now to join me! www.mobilize.us/nokings/even...
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...
www.mobilize.us
June 2, 2025 at 11:53 AM
I'm attending No Kings's event, “NO KINGS Cleveland” - sign up now to join me! www.mobilize.us/nokings/even...
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)
April 15, 2025 at 1:44 PM
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)
Reposted by Heather
Food Stamps: Myth Vs. Fact
theonion.com/food-st...
theonion.com/food-st...
March 29, 2025 at 6:00 PM
Food Stamps: Myth Vs. Fact
theonion.com/food-st...
theonion.com/food-st...
Reposted by Heather
it's working, keep going
March 4, 2025 at 5:21 PM
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.
March 3, 2025 at 1:10 AM
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 28, 2025 at 11:19 AM
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!
February 27, 2025 at 12:26 PM
February 28th is Rare Disease Day!
If you live near Baton Rouge, LA here’s a #RareDiseaseDay event to attend.
February 21, 2025 at 3:34 PM
If you live near Baton Rouge, LA here’s a #RareDiseaseDay event to attend.
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,
TEXAS,
ALASKA,
ALABAMA,
ARKANSAS,
FLORIDA,
GEORGIA,
INDIANA,
IOWA,
KANSAS,
LOUISIANA,
MISSOURI, MONTANA,
NEBRASKA,
SOUTH CAROLINA,
SOUTH DAKOTA,
UTAH, and WEST VIRGINIA,
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.
www.forbes.com
February 14, 2025 at 9:29 PM
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,
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
February 14, 2025 at 11:31 AM
Rare Disease Day is February 28th
origins.osu.edu/read/grace-w...
This is why Black History Month matters. Black history is American history!
This is why Black History Month matters. Black history is American history!
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
February 10, 2025 at 11:38 AM
origins.osu.edu/read/grace-w...
This is why Black History Month matters. Black history is American history!
This is why Black History Month matters. Black history is American history!
It’s Black History Month
February 9, 2025 at 4:20 PM
It’s Black History Month
Rare Disease Day is February 28th.
February 3, 2025 at 1:33 PM
Rare Disease Day is February 28th.