Pompe Alliance

01/23/2026

ANNOUNCEMENT: Opportunity for people attending the WORLD Symposium

01/23/2026

https://pompediseasenews.com/news/focused-ultrasound-allows-approved-erts-reach-brain-pompe-mice/

The use of focused ultrasound allowed approved enzyme replacement therapies to successfully enter the brain in a Pompe disease mouse model.

01/22/2026

🌿 We’re just three months away from the very first Pompe Alliance Women’s Retreat! 🌿
A few spots are still available — register soon so you don’t miss this special weekend of connection, rest, and empowerment.

✨ Retreat highlights include:
• Friday night meet‑and‑greet dinner
• A hands‑on cooking demonstration
• Massage therapy
• Stretching and movement sessions tailored for Pompe patients
• A visit to the beautiful Cleveland Botanical Garden

💚 Financial assistance is available, and the retreat is open to women living with Pompe disease and women caregivers.

Secure your spot using the link below. We can’t wait to welcome you.
https://forms.gle/nUgiiPnEeML8c7MWA

01/14/2026

This an article that I wrote about copay assistance/copay accumulator programs and the negative impact they have on patients.

As someone living with a rare disease in Ohio, I know how fragile access to life-saving treatment can be. A bill to help patients with rare or life-threatening illnesses is currently being debated in the Ohio Senate. The measure, Senate Bill 207, would prohibit insurers from diverting financial assi...

01/09/2026

🌿 Registration is OPEN for the Pompe Alliance Women’s Retreat — happening this April!
Join us for a restorative weekend created exclusively for women living with Pompe disease and women caregivers.

✨ Workshops on resilience & self‑advocacy
✨ Restorative activities
✨ Supportive conversations
✨ Community, connection, and joy

Space is limited, and April will be here before we know it.
Reserve your spot today and give yourself the gift of renewal this spring.

👉 Register here: https://forms.gle/R4iaQzm8PwieZzuKA
We can’t wait to welcome you.

01/08/2026

https://finance.yahoo.com/news/askbio-announces-fda-acceptance-investigational-130000058.html

Durham, N.C., Jan. 08, 2026 (GLOBE NEWSWIRE) -- AB-1009 program advances to Phase 1/Phase 2; clinical trial initiated in the United StatesTherapy granted United States Food and Drug Administration (FDA) Fast Track and Orphan Drug designationsPompe disease is a rare genetic metabolic disorder that wi...

01/08/2026

🌿 Registration is OPEN for the Pompe Alliance Women’s Retreat — happening this April!
Join us for a restorative weekend created exclusively for women living with Pompe disease and women caregivers.

✨ Workshops on resilience & self‑advocacy
✨ Restorative activities
✨ Supportive conversations
✨ Community, connection, and joy

Space is limited, and April will be here before we know it.
Reserve your spot today and give yourself the gift of renewal this spring.

👉 Register here: https://forms.gle/R4iaQzm8PwieZzuKA
We can’t wait to welcome you.

Event Address: Crowne Plaza Cleveland at Playhouse Square 1260 Euclid Ave, Cleveland, OH 44115 Contact us at (216)338-5736 or [email protected] Date: April 24, 2026 - April 26, 2026

01/08/2026

Our grief literacy post and article made such a wide impact WE ARE HOSTING A WEBINAR.
Join grief activist and bestselling author Lisa Keefauver—narrative-therapy trained social worker, keynote speaker, and host of Grief Is a Sneaky Bitch—as she shares powerful insights on how to reframe loss, navigate complexity, and center aliveness in a world full of grief.

REGISTER FOR THE WEBINAR https://us06web.zoom.us/webinar/register/WN_cFPBiyN8RUGpecAzZU_dXw #/registration

Read our grief article inspired by her work https://amda-pompe.org/grief/

01/08/2026

https://pompediseasenews.com/news/top-5-pompe-stories-2025/

The top five most-read stories on Pompe Disease News this year focused on advances in treatment and diagnosis for the rare genetic condition.

01/05/2026

The Duke Team is excited to announce the Pompe Conferences for 2026! We will have more information about location and clinic dates soon.

ADULT CONFERENCE
• Date: March 28th 2026
• This conference will take place fully virtually. There is NO in-person component to this meeting.
• This meeting will be recorded and available to watch for one month after the meeting date.
• Registration is not yet open. We will post a reminder and a MyChart message when it opens.

PEDIATRIC CONFERENCE
• Date: July 11th 2026
• This event will be hybrid. There will be an in person AND virtual option.
• This meeting will be recorded to watch for one month after the meeting date.
• Registration is not yet open. We will post an update and a MyChart message when it opens.

Thank you so much and we are excited to see you all in-person or virtually in 2026!

-Grace on behalf of the Duke Pompe Conference Planning Team

01/01/2026

💜 Happy New Post from Pompe Alliance! 💜

Thank you to our amazing Pompe community for your strength and support. Every share helps raise awareness and build hope. Together, we are stronger.

12/29/2025

https://pompediseasenews.com/news/pompe-gene-therapy-study-help-track-treatment-success/

Alpha-glucosidase activity levels may help identify when gene therapy effects can be measured in people with infantile Pompe disease on ERT.