Second Annual International Pompe Day – April 15, 2015

Tiffany House
Category: Archive
April 13, 2015

IPD Logo

For Immediate Release:
April 14, 2015

April 15th will mark the Second Annual International Pompe Day. The international Pompe community is comprised of Pompe patients, family members, friends, and partners from the scientific, medical, and industry communities. As a united force we have repeatedly shown over the years that “Together We Are Strong,” which is also our slogan for International Pompe Day.

In recognition of the Second Annual International Pompe Day, the International Pompe Association (IPA) would like everyone to take a moment and think about where we have been, where we are, and where we are going. Everything that has been accomplished has been because of our strength as a community, and it is our strength as a community that will see us to the next breakthrough in treatment and disease management.

The IPA and our affiliates have organized a variety of awareness activities to commemorate the Second Annual International Pompe Day. These include workshops, fundraisers, awareness campaigns, and an online Photo Gallery on the IPA website!

In addition to these activities, the IPA is excited to announce that April 15th (International Pompe Day) will serve as the “Launch Date” for the International Pompe Day Fundraiser: The Pause for Pompe.

The goal of the International Pompe Day fundraiser is to raise $50,000 (USD) to develop and produce a short film to raise awareness of Pompe disease. In particular, the need for access to therapy and the importance of early diagnosis will be emphasized. Studies have shown that early diagnosis and access to treatment results in the best long-term results for Pompe patients, and we believe that our short film will help future Pompe patients be diagnosed sooner by raising awareness of Pompe disease.

The “Pause for Pompe” challenges people to “Pause” (stay completely still) for 40 seconds. This 40-second Pause challenges participants to see what the most severely affected Pompe patients experience–the inability to move. It also represents the 1 in 40,000 people in the world that are affected by Pompe disease. So Pause for Pompe and donate to the IPA’s International Pompe Day Fundraiser so that future Pompe patients will no longer be forced to Pause!

For more information on the Pause for Pompe and to learn how you can participate, please visit the IPA website: www.worldpompe.org.

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