Georges Pompe Pals

05/29/2026

05/23/2026

We are still needing to fill spots for our August fundraiser. This is the largest event of the year for us! Click to reserve your spot! https://docs.google.com/forms/d/e/1FAIpQLSdTXiSP-tfPruoOlkPvAAtBOzhs2gq1TZiPnY2LTzC1l_-1eg/viewform?usp=publish-editor

05/20/2026

RIP to this beautiful soul!
Over more than three decades, Tiffany House helped bring Pompe disease from obscurity to global recognition. She was among the first patients in the world to receive enzyme replacement therapy. She helped pass newborn screening legislation in Texas. She co-authored peer-reviewed research. She founded the IPA’s Community Advisory Board. She raised over $7 million for Pompe research. She shaped treatment policy at the FDA. She built a worldwide community of patients, families, researchers, and advocates united by a single mission: a better future for everyone living with Pompe disease.

05/07/2026

We got a sweet letter from our sponsor child Mottu from Sri Lanka today! He is a little boy that GPP sponsors who has a rare genetic disorder. We sponsor him through an amazing program called Compassion International. This program is truly life changing and soooo many children are in need of sponsorship. Mottu just has his 3rd birthday and also is the same size as our George.

04/22/2026

https://www.facebook.com/share/p/1CiLWN7VDA/?mibextid=wwXIfr

💭 What is Pompe disease? Find out here: https://bit.ly/44wkkiC

From its cause to how it impacts muscles, breathing, and daily life, this article breaks it all down in a way that’s clear, supportive, and easy to understand.

✨ Whether you’re newly diagnosed, a caregiver, or just want to learn more—this is the place to start.

04/21/2026

I wanted to share with everyone this amazing company. They provide 3D printed assistance chairs for kids with mobility issues. It’s truly remarkable what we can do with a single printer! They are free of charge and you can apply on their website.

Connecting makers to requests for assistive devices.

04/15/2026

Today is National Pompe Disease day and also our last in center infusion. We can now move to home infusions. Today was a turning point all around after the horrific experience the last time. George actually got his height done without a fight. He was able to voice to us that it was scary when he saw the port supplies. We still had to hold him but if went a lot faster! He also was not afraid of the tube today and got his blood drawn from his port without any issues. He was soooo proud of himself today which is very rare at 2.5 years old. Happy National Pompe Day!

04/06/2026

Let’s give a shout out to DQ James for his fun and generous donation! We made $2,750 all by click the like button and all thanks to DQ James T for taking a gamble with us! Much love and light to him and his gambling for charities. It’s so great to see money being spent on a purpose, to enrich the lives of others.

01/16/2026

We are at the Ohio Sports Show in Millersburg Ohio alongside Life Of Riley Resort on Lake Vermilion. Come on out and see us both!