Acid Maltase Deficiency Association - AMDA

Hope is moving forward in Pompe disease.

In just the past few weeks, the Pompe community has seen encouraging progress across multiple areas of research.
New gene therapy trials are expanding. Oral therapies are entering human studies. Researchers are also working to better understand how Pompe affects the brain and how we can track it more effectively.

While there is still work ahead, these developments remind us that progress is happening and every study brings us one step closer to better treatments and better outcomes.

At AMDA, we remain committed to helping families stay informed, connected, and supported as this journey continues.

Pompe disease is rare, support shouldn’t be.

https://medschool.duke.edu/news/new-biomarker-could-guide-future-brain-targeted-therapies-pompe-disease?utm_source=chatgpt.com

Some acts of generosity ripple far beyond what we can see.

We are incredibly grateful to the Krueger family for their heartfelt donation to AMDA. Their support helps us continue providing education, resources, and connection for individuals and families navigating Pompe disease.

This gift is a reminder that even in rare disease communities, compassion runs deep and support makes a real difference.

We’ve shared our full letter of gratitude on our website. Take a moment to read it and join us in thanking the Krueger family for their kindness.

Pompe disease is rare, support shouldn’t be.

The diagnosis belonged to Rachel. The journey belonged to the whole family.

When Rachel Foster began experiencing weakness after the birth of her daughter, she assumed it was simply part of being a new mom. What followed was an 18-month search for answers, countless tests, multiple specialists, and ultimately a diagnosis of late-onset Pompe disease.

But this story isn’t told by Rachel.

It’s told by her daughter, Courtney.

In Bodysnatcher, Courtney shares what it was like growing up alongside her mother’s Pompe journey, from watching her navigate mobility challenges to learning lessons in courage, resilience, and perseverance that shaped her own life.

Rare disease doesn’t just affect the person diagnosed. It touches spouses, parents, children, siblings, and entire communities.

Thank you, Courtney, for sharing this deeply personal glimpse into your family’s story.

Read the full story on our website: https://amda-pompe.org/rachels-story/

Pompe disease is rare. Support shouldn’t be.

National Best Friends Day ❤️

A best friend isn’t always the person you’ve known the longest.

Sometimes it’s the person who understands why you’re tired when everyone else thinks you look fine. The one who celebrates a good clinic visit, checks in after an infusion, or simply listens when the journey feels heavy.

For many in the Pompe community, some of the strongest friendships have been built through shared experiences, mutual understanding, and the reminder that no one should have to navigate a rare disease alone.

Today, we’re celebrating the friends who show up, check in, encourage, and walk alongside us through both the good days and the challenging ones.

Tag a friend who has made a difference in your life. We’d love to help you celebrate them. ❤️

Pompe disease is rare. Support shouldn’t be.

🍽️ Pompe Kitchen: Fueling Your Day with Lower-Glycemic Foods

When it comes to nutrition and Pompe disease, there isn’t a one-size-fits-all approach. However, many people find that choosing lower-glycemic foods helps support steadier energy throughout the day.

The glycemic index (GI) measures how quickly a food raises blood sugar after eating. Lower-GI foods are digested more slowly, which may help avoid the energy spikes and crashes that can leave you feeling drained.

Some potential benefits of lower-glycemic foods include:

✅ More consistent energy levels
✅ Better appetite control
✅ Support for healthy weight management
✅ A great complement to a higher-protein eating pattern
✅ Support for overall metabolic health

Some lower-glycemic foods to consider:

🥚 Protein Foods: Chicken, turkey, fish, eggs, Greek yogurt, cottage cheese, lean beef, tofu

🥦 Vegetables: Broccoli, cauliflower, green beans, spinach, bell peppers, mushrooms, zucchini

🍎 Fruits: Berries, apples, pears, cherries, peaches, oranges

🌾 Smart Carbohydrates: Steel-cut oats, lentils, black beans, chickpeas, quinoa, sweet potatoes

One simple meal idea? Rotisserie chicken, roasted broccoli, and a small baked sweet potato. Easy, nutritious, and packed with protein and fiber.

We’re curious: What are your favorite lower-glycemic foods or meals? Share them in the comments and help inspire your fellow Pompe Peeps!

Some days remind us just how incredible this community truly is.

Pull for Pompe 2026 brought together 411 shooters across 100 teams for a day filled with camaraderie, purpose, and hope. Thanks to the generosity of our sponsors, participants, volunteers, and supporters, the event raised more than $110,000 for the AMDA Research Grant, including an amazing $12,770 from the silent auction alone.

This year’s grant was renamed in honor of our late president, Tiffany House, whose passion, leadership, and dedication continue to inspire our community every day.

We were also honored to welcome members of the Pompe community Amanda Joost and Ryan Colburn. Your presence made an already special day even more meaningful.

To everyone who showed up, volunteered, sponsored, donated, bid, cheered, and pulled for a cure: thank you. Because of you, hope continues to move forward.

Save the date: Pull for Pompe 2027 will be held on May 1, 2027.

One year later, and Tiffany's impact is still felt throughout the Pompe community. 💜

A fierce advocate, compassionate leader, and friend to so many, Tiffany House dedicated her life to creating a better future for those living with Pompe disease. She helped advance research, championed newborn screening, influenced policy, and inspired countless families around the world.

But beyond her accomplishments, Tiffany will always be remembered for the way she showed up for others—with grace, determination, and an unwavering belief in this community.

Today, we honor her legacy by continuing the work she cared so deeply about: raising awareness, supporting families, and fighting for a brighter future for everyone affected by Pompe disease.

If Tiffany touched your life, we invite you to share a memory below. 💜 https://vist.ly/56gx9

😊 Happy Smile Day! 😊

A smile may seem like a small thing, but it can brighten someone’s entire day.

Living with Pompe disease can bring challenges that others may never see. Yet time and again, our community shows resilience, kindness, humor, and strength. Whether it’s a smile shared during an infusion, a laugh with family, encouragement from a fellow Pompe patient, or simply finding joy in an ordinary moment, those small moments matter.

Today, we’d love to hear from you:

💚 What made you smile recently?

Share a photo, a memory, or a moment in the comments and help spread a little extra positivity throughout our Pompe community.

Pompe disease is rare. Support shouldn’t be.

💪 A special thank you to Andrea Faris, Director of the AMDA and sister of Tiffany House, for sharing such a meaningful message at Pull for Pompe.

PCMA is proud to support the AMDA Research Grant and the incredible work being done to advance Pompe disease research and advocacy. Events like this are a powerful reminder of the impact this community can make together 💙🏗️

Thank you to Andrea, the AMDA, Bexar Concrete, and everyone who continues to honor Tiffany’s legacy through this extraordinary event year after year 🙌

Learn more: https://vist.ly/542jd and https://vist.ly/542j8

Living with Pompe disease means our bodies process glycogen (stored sugar) differently, but when it comes to blood glucose, there’s no one-size-fits-all response.

Have you ever noticed that a meal that leaves one person feeling energized might leave someone else feeling tired, hungry an hour later, or even ready for a nap?

That’s because blood glucose responses can vary from person to person based on factors like:
✅ The foods eaten together
✅ Protein and fiber intake
✅ Activity level
✅ Sleep and stress
✅ Individual metabolism

This is one reason why paying attention to how you feel after meals can be just as important as following general nutrition advice.

Many people find that pairing carbohydrates with protein helps provide steadier energy and greater satisfaction throughout the day. That’s one of the reasons we’ve been sharing so many protein-rich snack and meal ideas lately!

We’re curious:

Have you noticed certain foods give you more energy, while others leave you feeling sluggish or hungry soon after eating?

Share your experiences below. Your insight might help another member of the Pompe community discover what works for them.

Pompe disease is rare, support shouldn’t be.