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: firstname.lastname@example.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!”