When the AMDA was formed in 1995, the goal was to raise awareness of Pompe Disease around the world and to promote research with the hope of finding a treatment or cure. But the AMDA had (and still has) another purpose—to be a source of support to patients and their families who are living with Pompe. Through a combination of educational material, one-on-one patient support, and active communicati
on and collaboration with the scientific community, the AMDA remains dedicated to supporting the Pompe Community. Today, the AMDA strives to support the Pompe Community through a variety of resources:
~Patient Advocate: The AMDA’s Patient Advocate, Marsha Zimmerman, is a registered nurse and has been working as a Pompe Patient Advocate since 2003. She has experience assisting families with everything from securing access to therapy, to assisting with education and communication with medical professionals, to providing emotional support. Whatever questions or issues you may face, Marsha can help you find the answers you need. She can be reached at her email address: [email protected] or [email protected]
~Website: The AMDA website provides current information on research and treatment advancements, disease management, research publications, and other important news. The AMDA website is: www.amda-pompe.org
~E-Blasts: The AMDA sends out regular Emails or “E-Blasts” to all registered patients and their families. Information in the E-Blasts may include patient stories, research and industry updates, clinical trial updates, recent research publications, international Pompe news, and upcoming Webinars, surveys, and events. Register on our website: www.amda-pompe.org
~ Webinars/Teleconferences: The AMDA offers webinars and teleconferences as a tool to facilitate the exchange of information between the Pompe patient community and experts in the Pompe field. All webinars and teleconferences have been recorded and are available on the AMDA website: www.amda-pompe.org
~ Events (check website and Facebook for updates):
• Rare Disease Day Observance, last day of February each year
• International Pompe Day Observance, April 15th of each year
• Pull for Pompe Fundraiser, Saturday, end of April each year
~Patient/Scientific Conference: The AMDA sponsors a scientific conference every 3-5 years. These conferences are traditionally held in San Antonio, Texas, and are attended by patients, physicians, and researchers from around the world. The conferences provide an opportunity to bring together the entire Pompe community to exchange information about recent developments in Pompe disease and best practices for disease management. Keep up to date on future conferences by visiting and registering on our website: www.amda-pompe.org
~Mentor Program: The AMDA Mentor Program can help get patients and their families in touch with other people who have already been through a similar experience for them to share experiences, feelings, and resources related to Pompe disease. The AMDA has a list of volunteer mentors within the Pompe Community who are waiting to assist patients and their families get the information they may need to deal with their new diagnosis. To participate in the Mentor Program, or to learn more about it, please visit www.amda-pompe.org. You can also contact Morgan Burroughs to begin the application process to be a Mentor or Mentee or to answer any of your questions. She can be reached at her email address: [email protected] or [email protected]
