International Pompe Day to make sure ‘Every Move Counts’ April 15
This year's event will focus on the importance of movement, being active
“Every Move Counts” on this year’s International Pompe Day, which is held every year to raise awareness and increase understanding of Pompe disease. This year’s Pompe Day will be celebrated April 15.
According to the International Pompe Association (IPA), this year’s observance will focus on the importance of movement, regardless of a person’s level of disability. With the slogan “Together We Are Strong,” organizers say the day will be one to celebrate “what we can do, not focus on what we can’t.”
Patients with Pompe are welcomed to share their stories, including pictures and videos showing how they move. Whether a patient uses modified physical therapy, plays with their dog, listens to music, or has other hobbies, all stories will help convey the importance of movement.
“We want to show all the ways that individuals in the community show that ‘Every Move Counts,’” the IPA stated.
Collected materials will be compiled as a resource and made available on the IPA website. Those interested in participating can reach out to [email protected]. People from all around the world and across the disease spectrum are encouraged to participate.
The day’s theme isn’t just limited to how patients move, but will also look at the latest developments in Pompe disease treatment and management, as well as patients’ daily lives.
With the goal of maintaining a positive attitude and not give up, participants are asked to submit artwork for the 2024 Calendar, which will be distributed among IPA members and others in the Pompe community. Artwork can be submitted to [email protected].
To help raise awareness, the IPA is making available for download four versions of an awareness poster, either as a PDF or individually as poster 1, poster 2, poster 3 and poster 4.
International Pompe Day is also open to other organizations that want to show their support. Those interested can send their logo (or name) to [email protected] for publication on IPA’s site.
Purchasing official items with the “Together We Are Strong” logo, such as T-shirts, tote bags, mugs, and more can be made at the International Pompe Day shop, hosted by the Acid Maltase Deficiency Association. Proceeds will go toward Pompe awareness.
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