The IPA Board was extremely saddened to learn of the unexpected passing of Henri Termeer, former CEO of Genzyme. Every tribute to Henri has mentioned the patient-centered focus he instilled and fostered within Genzyme. From personal experience, the IPA fully agrees with this characterization. The Pompe community has been extremely fortunate to have had Genzyme and Henri Termeer as partners in developing a treatment for Pompe. In the Pompe Community we have a true partnership between the three stakeholders: the Medical/Scientific Community, Industry, and the Patient Community. This partnership is only possible when all parties respect and value each other. The IPA believes that Henri Termeer was instrumental in setting the tone for Industry partners to engage with, and learn from their counter-parts in the Patient Community. He will be greatly missed.

Read more

• Henri Termeer, key biotech leader who built Genzyme into an industry giant, dead at 71 (The Boston Globe)
• Bio Leaders Mourn Passing of Genzyme Exec, Orphan Drug Innovator Termeer (xconomy.com)
• Henri Termeer Obituary: Link 1, Link 1

Image: This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. Attribution: Chemical Heritage Foundation.

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:

Age 0-5

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.