About KrabbeConnect
Founders, Stacy Pike-Langenfeld and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between Krabbe disease science and patient knowledge.
The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
Learn More about KrabbeConnect
KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time. The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients. KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.
We encourage you to learn more about us by understanding our Mission, Vision, and Multi-Center Approach here. If you have questions or want to connect with us, please Contact Us. We would love to hear from you!
We are excited to share that Dr. Deepa Rajan, Co-Director of the Neuro-genetics Clinic at UPMC, will be joining us at the KrabbeConnect Family Meeting for a special “Ask the Doctor” session.
This is an incredible opportunity for families navigating Krabbe disease to ask questions, learn from an expert in the field, and have open conversations about care, treatment, and the challenges of this rare disease.
We are so grateful to Dr. Rajan for taking the time to connect directly with our community and help empower families through education and discussion.
#curekrabbe #KrabbeDisease #raredisease #Leukodystrophy #krabbeconnect ... See MoreSee Less
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Rare diseases receive only a fraction of the funding and awareness they deserve. That’s why Michelle, VP of KrabbeConnect, is pushing her body through intense physical challenges — because it still pales in comparison to what children living with Krabbe disease endure every single day.
She’s choosing discomfort to bring awareness. She’s choosing action because families affected by Krabbe don’t get a choice.
Can you help us turn sweat into support, awareness into action, and hope into progress? Every donation helps move us closer to better treatments and one day, a cure. #curekrabbe
Donate here today: secure.qgiv.com/for/mkwctc ... See MoreSee Less
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We want you to know it all — the latest breakthroughs in Krabbe disease research, the people working behind the scenes to support our mission, upcoming events, family opportunities, advocacy efforts, and ways your loved one can be part of meaningful projects helping move us closer to #curekrabbe. 💙
Join the KrabbeConnect community as we learn, connect, advocate, and work together toward better outcomes for families impacted by Krabbe disease.
Visit KrabbeConnect.org, scroll to the bottom of the page, and sign up for our newsletter today. We’d love to stay connected with you! #curekrabbe ... See MoreSee Less
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Today, we honor all mothers impacted by Krabbe disease.
The moms raising young children, the moms caring for adult children, mothers living with Krabbe disease themselves, the grieving moms living without their child beside them, the grandmothers, stepmothers, and mother figures walking this journey with love and strength.
No two Mother’s Days look the same, and we recognize the many emotions this day can hold.
From all of us at KrabbeConnect, we are thinking of you today and honoring your courage, devotion, and endless love. Wishing you moments of peace, comfort, sunshine, and support today. 💜 #MothersDay #curekrabbe ... See MoreSee Less
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💙 We’re excited to announce one of our meeting sponsors — Polaryx Therapeutics!
Polaryx will be presenting on #SOTERIA, a Phase 2, open-label, basket #clinicaltrial designed to target multiple lysosomal storage disorders (LSDs) with similar underlying disease mechanisms — with Krabbe disease included as one of the conditions they aim to treat.
We are incredibly grateful for their support. 💙 All sponsorship dollars directly help families attend this meeting, making connection, education, and support possible for our community.
Please join us in thanking Polaryx for standing alongside families impacted by Krabbe disease.
👉 Learn more about the meeting @krabbeconnect.org ... See MoreSee Less
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💙 We’re excited to announce one of our meeting sponsors — Polaryx Therapeutics!
Polaryx will be presenting on #SOTERIA, a Phase 2, open-label, basket #clinicaltrial designed to target multiple lysosomal storage disorders (LSDs) with similar underlying disease mechanisms — with Krabbe disease included as one of the conditions they aim to treat.
We are incredibly grateful for their support. 💙 All sponsorship dollars directly help families attend this meeting, making connection, education, and support possible for our community.
Please join us in thanking Polaryx for standing alongside families impacted by Krabbe disease.
👉 Learn more about the meeting:
krabbeconnect.org/kcevent/krabbe-family-warrior-meet-up-at-the-united-leukodystrophy-family-confe...
#krabbeconnect #raredisease #clinicaltrials #curekrabbe #communitysupport ... See MoreSee Less
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