Welcome to the International Pompe Association (IPA)
The IPA would like to thank everyone who participated in the Talent of Pompe (ToP) Awards Contest on the occasion of the Fourth Annual International Pompe Day!
The IPA is very excited to announce the winners in each category:
First Place: Abdurrahman Amerat
Many people find it hard to breathe and if we save our trees we can then make it easier for people to breathe everywhere in the world!
Tips and Tricks from the Pompe Community
April 15, 2017 is the Fourth Annual International Pompe Day. The International Pompe Association (IPA), with the support of the global Pompe community, launched International Pompe Day in 2014. The goal of International Pompe Day is to raise global awareness of Pompe disease, a rare neuromuscular condition that affects approximately 1 in 40,000 people around the world.
When International Pompe Day was launched, the Pompe Community selected “Together We Are Strong” as its motto. We believe that as a united community of patients, family members, friends, scientists, doctors, and industry partners we have accomplished, and can continue to accomplish, great things. Together we have seen a treatment for Pompe become a reality for most people around the world, and working together we see new and better treatments on the horizon in the near future.
This year, as a global community we turn our attention and advocacy power to the importance of “Living Healthy with Pompe Disease”. Pompe disease is just one part of the Pompe individual’s life. To have a healthy lifestyle, those without Pompe have to eat healthy, sleep well, and stay active. The same is true for those with Pompe. And it can be a struggle to find the right balance, and the right approach to achieve a healthy lifestyle for all of us.
For this year’s International Pompe Day, the IPA would like to raise awareness of the benefits of “Living Healthy with Pompe” for everyone diagnosed with Pompe disesae. We understand the challenges that people can face because of the effects of Pompe, and want to provide support and encouragement to everyone. When trying to incorporate new habits and lifestyle goals it can be overwhelming at the beginning. You don’t know where to start, and it is easy to get discouraged. The ways to “Live Healthy” are as diverse as the Pompe Community, and it is our goal on International Pompe Day to support our Community as they strive to define what “Living Healthy with Pompe” means for each of them.
To celebrate International Pompe Day on 15th April 2017, IPA has expanded the annual art contest to include any art form that shows off the talents of individuals living with Pompe and their family members. Choosing winners of the ToP Award will be a challenge in itself; but our aim is to celebrate the wide range of talents within the international Pompe community. All submissions will be displayed in a special section of the IPA website after the event.