The IPA is excited to announce that the international Pompe community has chosen April 15 as the annual International Pompe Day! The goal of International Pompe Day is to foster international awareness of Pompe Disease and the slogan for our day is "Together We Are Strong". The IPA encourages everyone to become involved to show how STRONG our Community is – both in numbers and in passion! There are several ways that you can participate:
- Visit our International Pompe Day blog: https://ipompeday.blogspot.com/
- Participate in the International Pompe Day Activities!
- Become a Supporter! Organizations are invited and encouraged to become Supporters of International Pompe Day by submitting their logo (or name) for publication on the International Pompe Day website. Please email your logo to InternationalPompeDay@worldpompe.org
- Buy Your Official International Pompe Day Merchandise! Merchandise is available at the International Pompe Day Shop on Cafe Press. The Shop is hosted by the Acid Maltase Deficiency Association and proceeds will go towards Pompe Disease Awareness.
The IPA is excited to announce its plans for International Pompe Day. This year, we are focusing on raising awareness of the importance of movement. We all have different abilities and levels of disability, but the important thing to remember and focus on is that “Every Move Counts.” We should celebrate what we can do, not focus on what we can’t.
But we need your help! We want to show all the ways that individuals in the Community show that Every Move Counts. Do you have modified physical therapy that you can share? Do you keep moving by playing with your dog? Do you focus on music or other hobbies to keep yourself moving? The ways that we can show that Every Move Counts will be as diverse as our community! By sharing how YOU believe Every Move Counts, you can help others in our community! If you are interested in being part of this project, please reach out to us at email@example.com. Our plan is to collect these stories, videos, pictures, etc. and will then work with experts in the field to compile a set of resources that will be available on the IPA website. We will need representatives from all around the world, and across the disease spectrum so please consider joining our Project!
Every Move Counts also relates to developments in Pompe treatment and management, and our daily lives. Therefore, our SECOND project for International Pompe Day is that we are requesting submissions for a 2024 Calendar that we will create. We would like to ask our community to submit artwork for a calendar that we will distribute to our members and to others in the community to remind us throughout next year to not give up—Every Move Counts! In research, in drug development, and in our lives. So please submit artwork to firstname.lastname@example.org that shows what Every Move Counts means to you!
Finally, the IPA created an awareness poster (4 versions) that is available on our website: PDF 4 posters, JPG poster 1, JPG poster 2, JPG poster 3, JPG poster 4. Please feel free to download it and share it as much as you like to help raise awareness of Pompe. Perhaps at you physical therapy center, or gym, or school, or mosque or church. Wherever you want to share it, we encourage you to share it!
Happy International Pompe Day!