The PMD Foundation

Families living with PMD and PMLD access world-class care at International Leukodystrophy Centers. These specialized clinics connect families with specialists who understand the rare challenges of leukodystrophies and provide coordinated support across neurology, genetics, and therapy. ✨ This month, instead of just highlighting a clinic, we’re asking YOU: What’s one way your clinic team has made a difference in your journey? Drop your story in the comments or send us a message, we’d love to share how International Leukodystrophy Centers are making real impact for families around the world. 💫 Find a center near you: https://lnkd.in/eb6FZn3g

🎃👻 Happy Halloween from the PMD Foundation! 💛 Wishing our PMD and PMLD warriors, families, and friends a safe and happy Halloween! 🌙🧡 Dressing up for the holiday? Tag us or add them to the comments! We would love to see photos of your warriors in their costumes!!

🧠Did you know... Doctors often use MRI scans to help diagnose PMD. On these scans, the brain shows low levels of myelin, the protective coating around nerves that helps them send signals. For babies under 1–2 years old, MRIs can be tricky. Since their brains are still developing, the scans may look mostly normal. But doctors can sometimes catch early changes that point to PMD or another leukodystrophy. Awareness of these early signs helps families get answers sooner. 💙 https://lnkd.in/gvXfGeFM

Do you have a resource that’s helped your family on their PMD journey? We’re always adding to our Resource Hub to make it easier for families to find doctors, equipment, and support. If you know something worth sharing, leave a comment or send us a DM! https://lnkd.in/gsDps3Jf

The PMD Foundation partners with researchers worldwide to accelerate progress by funding studies, building collaborations, and providing access to family registries and natural history data. These efforts make it possible to better understand how PMD and PMLD develop, and to move closer to future treatments. Want to meet the doctors driving this work? 👩🔬👨🔬 👩🔬👨🔬 Get to know our researchers here: https://lnkd.in/e2aQWgP

👋 Meet the Lourenço family. Since Daniel’s PMD diagnosis, they’ve been navigating the ups and downs that come with rare disease life. Now, they’re sharing their story with the hope of connecting with other PMD families who get it. Check out their story here: https://lnkd.in/eqXPMriA

You can fuel PMD research and family support in so many ways! 💛 🚗 Donate a vehicle 🏃♂️ Event sponsorships 🎈 Donate your birthday, 📖 Share a family story Choose the way that works best for your family. https://lnkd.in/ewcskUWB

The Affected Family Registry is like a newspaper subscription for the PMD community delivered to your mailbox. You’ll find the latest in PMD research, family stories, events, and potential clinical trials delivered to your mailbox. Adding your family to the registry strengthens the community and makes sure the news that matter most reaches you. It’s quick. It’s simple. Join today! ⬇️ https://lnkd.in/gwvFckhH

Living with PMLD looks different for every child. Some families see challenges with movement, speech, or daily routines, and others notice strengths and milestones that come in their own time. No two stories are the same, and that’s what makes our community so powerful. 💪 https://lnkd.in/esyVWSaM

Help build the PMD Foundation website and community by sharing your story! It’s simple: write your family’s experience in as many or little words as you want, and send in a few photos. 📸 That’s it! Sharing your story makes it easier for newly diagnosed families to connect, and it’s a well-deserving chance to brag about your amazing child and the strength of your family. 💪😉 Ready to add your story? ➡️ https://lnkd.in/dv6-3Znk