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Please don’t just watch—help us change what comes next. 💙
For families facing Krabbe disease, the need is real, the challenges are relentless, and time matters.
Participate. Share. Donate. Every person and company who steps up helps us support families, advance research, and keep pushing toward what we all want most: a cure.
A special thank you to Tammy Simon, Amanda DeRossett, Elivate Wellness, English Law Group, Homepage Reality, and Biggby Coffee 🫶
We can’t do this without you. 💙
#CureKrabbe #KrabbeConnect #tyghstrides
Register here: krabbeconnect.org/kcevent/tyghs-strides-to-curekrabbe-5k/
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Life is hard. It’s even harder when you’re navigating a rare disease like Krabbe.
That’s why coming together each June means so much to our community. For one weekend, families find a place to learn, connect, laugh, and support one another through the pain, uncertainty, and grief that so often accompany this journey.
A heartfelt thank you to Polaryx Therapeutics and the Rosenau Family Research Foundation for making these meaningful moments possible. We truly couldn’t do it without your support.
📸 The photos are in! Check your inbox—we’ll be sending the gallery link within the next 24 hours.
Until we meet again, we hope these memories serve as a small gift to carry you through the days ahead.
2027 dates- June 25-27💙 ... See MoreSee Less
1 CommentsComment on Facebook
Life is hard. It's even harder when you're navigating a rare disease like Krabbe.
That's why coming together each June means so much to our community. For one weekend, families find a place to learn, connect, laugh, and support one another through the pain, uncertainty, and grief that so often accompany this journey.
A heartfelt thank you to Polaryx Therapeutics and the Rosenau Family Research Foundation for making these meaningful moments possible. We truly couldn't do it without your support.
📸 The photos are in! Check your inbox—we'll be sending the gallery link within the next 24 hours.
Until we meet again, we hope these memories serve as a small gift to carry you through the days ahead.
2027 dates- June 25-27💙
#curekrabbe #KrabbeConnect #rare ... See MoreSee Less
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Did you know that in April 2026, Expert Recommendations for Rapid Response to Positive Newborn Screen for Infantile Krabbe Disease were published. Here's 3 highlights:
🧬 1. Every day matters.
For infants with Krabbe disease, hematopoietic stem cell transplantation (HSCTHematopoietic stem cell transplantation (HSCT), a type of transplantation using multipotent hematopoietic stem cells typically derived from bone marrow, peripheral blood, or that from umbilical cord b) should ideally occur before 30 days of age—before symptoms begin—to provide the best chance for improved survival and development.
⚡ 2. A positive newborn screen requires immediate action.
The paper emphasizes that clinicians should move quickly with confirmatory testing, family counseling, and referral to an experienced Krabbe treatment center, as there is only a narrow window to intervene.
🤝 3. Families deserve expert guidance and compassionate support. The publication stresses the importance of clear communication, multidisciplinary collaboration, and supportive care—regardless of whether a family chooses transplantation. Every family should have access to experts who understand this rare disease.
Full publication here - www.neurology.org/doi/full/10.1212/NXG.0000000000200383
#curekrabbe #KrabbeDisease #krabbeconnect ... See MoreSee Less
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💙 Family-Recommended Adaptive Seating Solution
One of our Krabbe families recently shared this Tommy Bahama Swing Lounger Chair, and we thought it was worth passing along to our community. It was purchased at Costco ($39.99)
While it's not a medical device, Niko and his family have found it to be a comfortable seating option for picnics, camping, sporting events, the backyard, or simply relaxing at home.
💙 Have you found a product that's made caregiving a little easier? Share it with us! We'd love to continue highlighting family-recommended products that may help others navigating the Krabbe journey.
Please note: KrabbeConnect is not affiliated with or endorsing this product. We're simply sharing a recommendation from one of our families that others may find helpful. ... See MoreSee Less
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Did you know September is 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? 💙
It's one of the most important times of the year to show up, spread awareness, and help create a brighter future for children and families affected by Krabbe disease.
This September, you have two ways to make a difference while investing in your own health and well-being:
🏃 Tygh's Strides to #curekrabbe – Join us in person for a family-friendly 5K featuring a run/walk, vendor booths, raffle prizes, and a fun day of community. Register here now: bit.ly/3Q7FRLr
🌎 Anywhere Strides to #curekrabbe – Participate virtually from anywhere in the world! Walk, run, bike, or roll at your own pace while tracking your miles and cheering on others in the Racery app. Register here now: bit.ly/3RqG6SK
Every step you take helps raise awareness, support families, and advance research toward better treatments—and one day, a cure.
💙 Choose the event that's right for you and help us make every mile matter. ... See MoreSee Less
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