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...
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.
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)
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.
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.
Rare Disease Day is February 28th
February 14, 2025 at 11:31 AM
Rare Disease Day is February 28th
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.
February is Black History Month!
February 1, 2025 at 1:38 PM
February is Black History Month!
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.
January 29, 2025 at 7:51 PM
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.
Pompe Alliance will have a poster presentation at the WORLD Symposium, I’m the fifth person listed on this page.
January 24, 2025 at 8:59 PM
Pompe Alliance will have a poster presentation at the WORLD Symposium, I’m the fifth person listed on this page.
Pompe Alliance is proud to host these wonderful organizations in an informative webinar. Use the link below to register.
us02web.zoom.us/meeting/regi...
us02web.zoom.us/meeting/regi...
January 24, 2025 at 12:43 AM
Pompe Alliance is proud to host these wonderful organizations in an informative webinar. Use the link below to register.
us02web.zoom.us/meeting/regi...
us02web.zoom.us/meeting/regi...