The Acid Maltase Deficiency Association (AMDA) is renaming its research grant program back to the AMDA Research Grant, the name it carried when the program was first established in 2010. The change honors the life and legacy of Tiffany L. House, who passed away on May 25, 2025, and who served as president of the AMDA and chair of the International Pompe Association.
Tiffany dedicated years of her life to the global Pompe community: advancing research, supporting patients and families, and building bridges between advocates around the world. Her leadership shaped the AMDA into the organization it is today, and her absence is felt deeply by everyone who knew her and everyone whose life she touched.
In 2013, the grant program was renamed the Helen Walker Research Grant in memory of Helen Walker (1940–2012), founding president of the Australian Pompe Association and a board member of the International Pompe Association. Walker worked closely with Tiffany throughout her years of leadership, and together they championed a shared vision: uniting patients, families, and researchers across the globe, and ensuring that everyone living with Pompe disease had access to treatment and a voice in their community.
Helen Walker’s legacy remains an essential part of the AMDA’s history, and her contributions to the global Pompe community will continue to be honored in the AMDA’s work. Restoring the program’s original name is not a step away from that legacy; it is a way of carrying forward, in Tiffany’s memory, the same spirit of collaboration and patient empowerment that Helen and Tiffany built together.
Beginning with this year’s grant cycle, the program will once again be known as the AMDA Research Grant. Since 2010, it has funded more than 16 research projects spanning therapeutic development, clinical outcomes, diagnostics, and rehabilitation, made possible through the generosity of the Pompe community and initiatives like Pull for Pompe.
“Our organization exists because of my sister. Tiffany’s diagnosis is what led our parents to found the AMDA, and she spent the rest of her life building on that foundation for our entire community. Returning the AMDA Research Grant to its original name is how we carry her legacy forward: through research and the people it helps, not just a name on a program” – Andrea Faris, AMDA Director
Tiffany touched so many lives, and we invite you to help us remember her. Visit her memorial page to read her full story and share a memory, a photo, or simply your name on her Memory Wall: https://amda-pompe.org/tiffany-l-house/
To learn more about the AMDA Research Grant, including the research it has helped fund and this year’s application details, visit https://amda-pompe.org/amda-research-grant/.