International Pompe Association

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 info@worldpompe.org. 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 info@worldpompe.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!
#TOGETHERWEARESTRONG

For International Pompe Day on April 15, 2022 we asked people in the global Pompe community to contribute a video illustrating how strength and resilience is gained through friendship. All recordings can be watched in the IPD 2022 playlist on the IPA YouTube channel, on the International Pompe Day blog and here:

Experiences from Pompe Association in Japan
Four parents of Pompe children, and one individual with Pompe disease, discuss their experiences with diagnosis, treatment and challenges while living with Pompe disease in Japan.

Pompe Journeys: Danish family
From Denmark, Anders, Andrea's father, discuses his daughter's journey; from Pompe disease diagnosis as an infant, through to teenage life, highlighting the importance of close family support.

Father and Son discuss PompAbility
Allan Muir talks with his son about the series of short films they created together. The PompAbilty film series can be viewed from the Pompe Support Network website and also on the Pompe Support Network YouTube channel.

IPD 2022 AMDA
Three of members of the AMDA (Acid Maltase Deficiency Association) (Marsha Zimmerman, Morgan Burroughs, and Tiffany House [President]) introduce themselves and talk a little about what they do for the AMDA and how it helps the Pompe community.
Website: https://amda-pompe.org, email: info@amda-pompe.org

Tiffany in conversation with her sister and family
A short conversation with my sister and her family about the strength I get from them. Be warned—we have little kids so it’s a little chaotic! :-)
Tiffany from Texas

New Zealand Pompe Network
In NZ we have formed great friendships among our Pompe families. With those connections we are able to support and understand each other even better. It is much easier to be stronger when you have people to support you.

Happy International Pompe Day from the Italian Pompe Community
A short conversation in Italian about what strength and resilience mean to us.

Pim Pijnappel in conversation with Tiffany House
Tiffany House, AMDA President, discusses international cooperation with Dr. Pim Pijnappel, Associate Professor at the Erasmus Medical Centre, Rotterdam.

Pompe Voices from France
This is a very moving conversation between Olivier and his close friend. The conversation concentrates on what’s happening in the body and Pompe medication, and the difficulty of finding support. But Oliviers's friend is probably the person who best understands the impact of his condition, both in body and mind.

Nina Raben in conversation with Tiffany House
Dr Nina Raben, who works at the National Institutes of Health (NIH), talks of her 30 year of dedication to understanding the science behind Pompe disease and its treatments. Her excitement and motivation comes from meeting and listening to patients who she regards as a very well informed community. Nina also talks of her support for the Ukrainian Pompe community and is impressed by the way the International Pompe community is supporting them.

Priya Kishnani talks with Tiffany House
Prof. Priya Kishnani is well known to many people within the international Pompe community. Priya is Professor in the Department of Molecular Genetics and Microbiology at Duke University School of Medicine. She talks of the privilege of working with such a strong and friendly patient community, and feels it is a very special relationship that provides motivation to future generations of physicians and scientists.

Ryan and friends say HI Pompe Day
Ryan, Steven, Alison and Nealie say "Happy International Pompe Day!"

April 15, 2021 will be our 8^th Annual International Pompe Day!

The IPA believes that raising awareness of Pompe Disease is key, and this year’s theme has been selected as “Pompe Around the World.”

How You can Participate:

1. Our goal with Pompe Around the World is to show what it is like to live, cope, or how you are connected with Pompe all over the world — that no matter where we live we are all connected. Please take a picture that represents where you live and share a short statement about your life.
2. Send an email to ipd2021@worldpompe.org

• the subject of your email will be the title of your post;
• the body of the email will be the post itself, where you can share your short statement;
• to include your photo in your post, you can simply attach the image to your email (total size max. 10 MB).
• Please include your name, country and age in the email, so we can show the world how strong our Community is.

By submitting a contribution, you agree that it is published on our 2021 International Pompe Day blog: ipompeday.blogspot.com

The Blog will go live on International Pompe Day—April 15, 2021. However, we will post a list of submissions, which will be periodically updated, so that you can see if your submission has been received.

Thank you!

The IPA would like to thank everyone who participated in the Talent of Pompe (ToP) Awards Contest on the occasion of the Fifth Annual International Pompe Day!

The IPA is very excited to announce the winners in each category:

Age 0-7

First Place: Abdurrahman Amerat

The sun gives us light, energy and it grows food to make everyone strong. It also makes the universe powerful.

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.

The IPA would like to thank everyone who participated in the Third Annual International Pompe Day Art Contest! The participation level this year was the highest yet!

All of the judges expressed how much they enjoyed seeing everyone’s unique interpretation of “Together We Are Strong.”

The IPA is very excited to announce the winners in each category:

Age 6-10

Chloe Mah (First place)

Finger painting by Chloe using many colors with each representing different stakeholders coming together to support people with Pompe disease.

Abdullah Hashim Amerat (Second place)

When we are together we can take off and do super things!

Jesse Walker (Third place)

My piece shows together we are strong because of the way the letters are drawn together to support each other to show Together We Are Strong. Even when one of us falls out of place, we still pick them up and help them fit in and stay strong.

"Translational aspects are key elements of the rare disease field, and Pompe disease plays a major role model for the entire rare disease community. Linking international resources, researchers, clinicians, public money and industry together will provide superior treatment to all of our patients with harmonized standards of care around the world. I strongly support any networking that includes the national and international Pompe patient organizations. As we made great steps forward during the past decade, let´s celebrate the first annual International Pompe Day on April 15, 2014!"

Professor Benedikt Schoser
Friedrich-Baur Institute, Department of Neurology, Munich, Germany

"For the past twenty five years, I have studied the biochemistry, molecular genetics, and cell biology of Pompe disease. My work days are similar to those of most scientists - long hours, intellectual and experimental challenges that are both addictive and frustrating, tedious manuscript preparation, and worries concerning research funding. So what, you might ask, keeps me coming back to my laboratory each day? Hackneyed as it may sound, I have to disclose that it is the infusion of incentive to find better treatments for Pompe disease that I experience following my attendance at meetings that include patient presentations. No scientific talk or high of discovery so deeply inspires and motivates."

Dr. Nina Raben
Staff Scientist, Laboratory of Muscle Stem Cells and Gene Regulation, NIAMS, National Institutes of Health, Bethesda, MD, 20892, USA

"Duke has a long and dedicated history to Pompe research. To make great strides in the field and improve the lives of our patients, we need to build awareness and create partnerships among the researchers, patient organizations and industry. We are very excited to support and be a part of the first annual international Pompe day as we celebrate Together We Are Strong!"

Priya S. Kishnani, MD, MB BS
Duke University Medical Center, Durham, NC 27710, USA

"Together we are strong! - A better slogan for the first International Pompe Day could not have been chosen. Activities around Pompe disease either driven by patients, clinicians, scientists or industrial parties have always been focused on a common goal: understanding and combatting the disease in order to improve the life of patients. Patients are pressing doctors to diagnose and cure their disease, doctors put the pressure on scientists to come with brilliant solutions, and finally the pressure is laid on industrial parties to proof they can realize the 'unmet needs'. The magic with Pompe disease is that each party stands for its own case, collaborates but also quarrels with other parties, but at the end all parties adhere to the same common goal and achieve that goal. Together we are strong!- a very true message, worthwhile to be spread at this first International Pompe Day.

Arnold JJ Reuser
Department of Clinical Genetics, Center for Lysosomal and Metabolic Diseases, Erasmus MC University Medical Center, Rotterdam, The Netherlands