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Join us this Saturday for Tygh’s Strides to #curekrabbe—our final in-person opportunity to come together during LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin she Awareness Month!
🏃♀️ Walk or run the 5K for just $35
🙌 Not doing the 5K? Come out for FREE!
🎟️ Grab some raffle tickets and take your chance at winning some AMAZING prizes!
You don’t have to run. You don’t have to walk. You just have to show up.
Krabbe disease is rare, and rare diseases are easy to overlook. Every person who comes out helps us raise awareness, support families, and remind the world that those impacted by Krabbe disease matter.
Bring your family. Bring your friends. Come cheer on Tygh and our Krabbe community. 🧡
📍 Shepherdsville City Park
📅 Saturday, September 26
➡️ $35 to participate in the 5K | FREE to attend
Let’s finish Leukodystrophy Awareness Month STRONG. 💪 #curekrabbe
krabbeconnect.org/kcevent/tyghs-strides-to-curekrabbe-5k/ ... See MoreSee Less
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In honor of Leukodystrophy & Newborn Screening Awareness Month, families impacted by Krabbe disease have an opportunity to learn how you can personally help move Krabbe research forward. 🧡
Join us today at 1 PM ET / 12 PM CT to learn more about KrabbeCURES—why your experiences matter, how your participation contributes to research, and how together we can help build a better understanding of Krabbe disease.
Your experience is more than your story—it can become part of the research. ... See MoreSee Less
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What a powerful way to celebrate #NewbornScreening Awareness Month and #Leukodystrophy Awareness Month!
As of today, North Carolina has officially become the 23rd state to begin actively screening for Krabbe disease!
Milestones like this don't happen overnight. Many thanks to the dedicated NBS program and lab staff for their technical diligence, and—most importantly—to the North Carolina families who courageously shared their stories year after year to ensure future babies get the early detection they deserve. ❤️
#NBS #RareDiseaseAdvocacy #HealthcarePolicy #KrabbeConnect #KrabbeDisease ... See MoreSee Less
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Meet Brian! He has Adult Krabbe disease. It can look very different from the early onset forms—but its impact can still be profound.
Brian spent years searching for answers before finally receiving the correct diagnosis. Today, as Krabbe continues to take away abilities, his mantra is simple: “Find a way.”
We’re grateful to Brian for sharing the realities of living with adult Krabbe disease—and reminding us why better diagnosis, research, treatments, and ultimately a cure matter at every age. 🧡
Krabbe disease doesn’t have an age limit. Neither should hope.
#KrabbeDisease #AdultKrabbe #CureKrabbe #KrabbeConnect ... See MoreSee Less
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Fact Card 6: For Leukodystrophy Awareness Month, we’re shining a light on what happens in Krabbe disease—💙🧡
Krabbe may be rare, but its impact on individuals and families is enormous. Awareness leads to understanding. Understanding leads to action.
Every family. Every story. Every step forward brings us closer. Together, we can #curekrabbe 🦋
#leukodystrophyawareness #krabbedisease #curekrabbe ... See MoreSee Less
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Meet Weston. 💙
During Leukodystrophy & Newborn Screening Awareness Month, we are sharing the faces and stories behind Krabbe disease.
For the first six months of his life, Weston’s family searched for answers while he was misdiagnosed. Once they finally heard the words Krabbe disease, Andrea and Nick traveled across the country searching for any glimmer of hope that could save their little boy.
Just three months after his diagnosis, Weston passed away at 9 months old, surrounded by the loving arms of his parents.
Weston’s story is one of the reasons newborn screening matters. With infantile Krabbe disease, time can change everything. Early identification can give families the opportunity to seek expert evaluation and understand treatment options before symptoms progress.
This month, we remember Weston. We say his name. And we keep working toward a future where families don’t spend precious months searching for answers.
His name is Weston. He is so loved. 💙
#LeukodystrophyAwarenessMonth #NewbornScreeningAwarenessMonth #KrabbeDisease #KrabbeConnec ... See MoreSee Less
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