Acid Maltase Deficiency Association - AMDA

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Acid Maltase Deficiency Association - AMDA

The official site of the Acid Maltase Deficiency Association (AMDA); a non-profit. The AMDA hosts numerous webinars a year for the Pompe community.

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 communication 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: marsha.zimmerman@amda-pompe.org or info@amda-pompe.org

~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: Morgan.Burroughs@amda-pompe.org or info@amda-pompe.org

12/18/2025

Research continues to deepen our understanding of Pompe disease, from earlier diagnosis to advancing treatment strategies that support respiratory and muscle function. Every study, clinical insight, and shared patient experience helps move the field forward.

As scientists, clinicians, and patient advocates work together, we are reminded that progress in Pompe research is not just data — it represents real lives, improved care, and hope for stronger futures.

The AMDA remains committed to supporting research collaboration, sharing trusted information, and amplifying the voices of the Pompe community.

12/17/2025

The holidays are coming fast, and many of us are preparing our homes, schedules, and hearts for a season of celebration. This time of year often brings a mix of joy, anticipation, and plenty of planning.

For people living with Pompe disease, a little extra preparation can make the season feel more peaceful and enjoyable. That might look like arranging travel with plenty of rest time, planning accessible seating for gatherings, checking equipment ahead of busy days, or making sure medications and supplies are organized before holiday events begin.

Small steps taken now can help prevent stress later and allow you to focus on what really matters. Joy. Connection. Community.

If you live with Pompe or care for someone who does, what is one simple thing you are doing to get ready for the holiday season?

12/12/2025

Enhance your expertise in recognizing and managing late-onset Pompe disease (LOPD).

✔️Identify patients with LOPD using the latest diagnostic criteria, enzyme-activity testing,
and genetic analysis
✔️Compare mechanisms of action and long-term outcomes of current therapies
✔️Review new safety and efficacy data, including patient-reported outcomes
✔️Build individualized treatment plans through multidisciplinary care and shared decision-
making

https://bit.ly/46deLHW

12/10/2025

AMDA 2025 Year in Review — A Look Back at What We Achieved Together

This year brought meaningful progress, powerful community moments, and continued advocacy for every individual and family living with Pompe disease. From expanding educational outreach to strengthening global collaborations, the AMDA worked to elevate patient voices and ensure that Pompe families are informed, supported, and connected.

The 2025 Year in Review highlights key accomplishments across research updates, international partnerships, community programs, and newly developed patient resources. It also reflects the incredible resilience and unity of our community — none of this work happens without you.

If you’d like to explore the full recap, including major milestones and what’s ahead for 2026, you can read the entire document here:

👉 View the full 2025 Year in Review on our website
https://amda-pompe.org/wp-content/uploads/2025/11/2025_AMDA_Year_in_Review.pdf

12/09/2025

It’s National Influenza Vaccination Week — an important reminder for our Pompe community.

For people living with Pompe disease, respiratory health is never something to take lightly. Because Pompe weakens the muscles needed for breathing and coughing, even a mild case of the flu can escalate quickly into serious complications. That’s why yearly flu vaccination remains one of the strongest tools we have for prevention and protection.

Why it matters:
• Weakened respiratory muscles increase the risk of severe flu complications.

• Research shows flu vaccination can reduce ICU admissions by up to 82% and significantly lower flu-related deaths.

• New flu strains circulate each season, making annual vaccination important for maintaining protection.

• The International Pompe Association recommends planning flu shots around Myozyme® infusions for optimal timing.

Getting vaccinated protects not only individuals living with Pompe disease, but also the caregivers, friends, and family members who are part of their daily support system.

A small step and a big layer of protection.

12/08/2025

WHEN PASSION MEETS PRESSURE: A Musician’s Quiet Struggle

In his newest article, Lucas Garrett opens up about something many musicians feel but rarely talk about; the burnout that comes when your greatest passion also becomes your craft. He describes that moment when practicing shifts from inspiring to frustrating, and how a simple plateau can make even the most beloved instrument feel heavy in your hands.

One line that sticks: “Frustration in one’s craft is the antithesis of creativity.”

If you’ve ever felt that tension between loving your art and feeling exhausted by it, this piece will speak directly to you.
Garrett also shares practical insight including what burnout really looks like, why it sneaks up on artists, and the role that rest plays in rekindling creativity.

Whether you’re an artist or musician yourself or just someone who loves music and art, this is a thoughtful, honest read worth your time.

Read the full article here:https://amda-pompe.org/burnout-creativity-and-rest/

12/06/2025

Today we are celebrating a beautiful piece of Christmas artwork created for the AMDA by watercolor artist Annic Kolbrück.

Her work captures the heart of the Pompe community and shines light on the strength and hope we carry into every season.

Annic generously donates all proceeds from her artwork back to the Pompe community. If you would like to support her and explore more of her creations, you can visit her page at www.annickolbrueck.de.

Thank you, Annic, for using your gifts to lift our community.

12/05/2025

At Sanofi’s Global Rare Impact Awards in Vienna, the rare disease community came together to honor leaders whose work has shaped care, advocacy, and connection around the world. This year, two remarkable voices from the Pompe community were recognized for their lifelong dedication.

Tiffany House, the AMDA’s late president, was celebrated as a visionary advocate whose compassion and leadership continue to inspire the work we do today. Her legacy remains a guiding light for families, caregivers, and organizations across the globe.

Maryze Schoneveld van der Linde, of the International Pompe Association, was honored for her tireless commitment to improving access to care and strengthening rare disease networks, particularly in developing countries. Her advocacy has opened doors for countless patients and families.

We are grateful for the impact these leaders have made and for the enduring strength they bring to the Pompe community.

12/04/2025

The AMDA is aware of the recent medical crisis involving Wael, a 30-year-old in Texas living with advanced Pompe disease.

After a sudden loss of caregiving support, Wael developed severe pneumonia and sepsis. We are grateful to share that he is now out of the ICU and continuing to receive medical care and monitoring. His situation is heartbreaking and is a powerful reminder of how quickly things can change for those with advanced Pompe.

How AMDA Supports Families

We’re here to
• Share clear and reliable Pompe information
• Help you understand symptoms, treatments, and next steps
• Offer guidance when the healthcare system feels overwhelming
• Advocate for your needs and safety

Why Early Outreach Helps

Small concerns can become emergencies very quickly. If something feels off such as breathing changes, new symptoms, trouble getting meds, equipment issues, or gaps in caregiving, reach out to us early. We can help you navigate before things escalate.

When You Contact Us

It helps if you can share
• Symptoms or changes
• Test results, medications, or equipment used
• Which doctors or caregivers are involved

Our thoughts remain with Wael and his family. The AMDA is committed to supporting the Pompe community with compassion, guidance, and education.

12/01/2025

The Power of a Simple Compliment

Giving a genuine compliment doesn’t just brighten someone else’s day — it can lift your own mood too.

Studies show that small acts of kindness, like telling someone you appreciate their help or admiring a friend’s creativity, can spark feel-good chemicals and strengthen our sense of connection. Even something as simple as saying “I love how patient you are,” or “Your smile made my day,” can create a moment of joy for both people. Little compliments can go a long way.

11/29/2025

Looking for something fun to do with family today?

Game night is one of the easiest ways to spend time together, and it’s an activity that works beautifully for both people living with Pompe and their loved ones.

Card games, board games, and puzzles don’t require a lot of energy, but they bring out conversation, laughter, and real connection. Everyone can participate in their own way, at their own pace.

Some community favorites:
• Uno
• Yahtzee
• Connect 4
• Scrabble tiles on a tray
• Memory matching games
• Dominoes
• Trivia cards
• Puzzles

These moments matter.
They give families a way to be together that feels fun, relaxed, and accessible for all.

What’s your go-to game for a cozy family night?

11/27/2025

On this Thanksgiving Day, we are grateful for every person in the Pompe community.

Grateful for your strength.
Grateful for your courage.
Grateful for the way you show up for one another.

Living with Pompe can bring challenges, but it also brings a powerful reminder that community matters. Today we honor the families, caregivers, clinicians, advocates, and every individual living with Pompe who makes this community what it is.

From the AMDA family to yours, we hope your day is filled with moments of comfort, connection, and gratitude.

Happy Thanksgiving.

Address

P. O. Box 700248
San Antonio, TX
78270

Website

http://www.amda-pompe.org/

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