Cure LBSL
LBSL is a degenerative brain/spinal cord disease. There is no cure but there is lots of hope. / a.k.a. #TheAwesomeDisease Cure LBSL, formerly known as A Cure for Ellie, is on a mission to support patients, raise awareness and find a cure for leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation (LBSL). “A Cure for Ellie” is a registered non-profit organization dedicated to raising awareness and funds for research into LBSL, a progressive and very rare genetic disorder that affects the brain and spinal cord; most often developing in children, affecting their ability to walk, then even to stand and coordinate fine and gross motor skills. We also provide information and support to families and individuals living with the disease.
Founded
2013
1900
X (Twitter)
500
Address
ARLINGTON
Cure LBSL Calling all LBSL patient and families. The LBSL externallyled PFDD meeting will be held on Friday Aug. 1 in Washington D. C.
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Together, we can make a real impact in communities around the world. Help us bring hope and support.
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From Social media
News about Cure LBSL from their social media (Facebook and X).
- Cure LBSL
- 2025-07-31
📣 JOIN US TOMORROW. 📣 We've been working for months to prepare for our big EL-PFDD meeting to share with the world about what it's like to live with LBSL and what our community wants in a potential treatment. (fb) ... more
Liked (4) Commented (0)
- Cure LBSL
- 2025-07-30
👀 ARE YOU READY. 👀 Tune to our LBSL externally-led Patient-Focused Drug Development meeting on Friday to hear from the LBSL community about living with this rare disease and their perspectives on future treatments. (fb) ... more
Liked (3) Commented (0)Discussions
Odpovědí v diskuzi
1
1. How can we effectively promote awareness about LBSL in communities to support patients and families affected by this disease?
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Brooklyn Simmons
2 days ago
Odpovědí v diskuzi
1
2. What key topics do you believe should be addressed during the upcoming PFDD meeting with the FDA to advocate for better treatment options for LBSL?
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Brooklyn Simmons
2 days ago
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Together, we can make a real impact in communities around the world. Help us bring hope and support.
So inspired by organizations like Cure LBSL! Together we can drive awareness and hope for those impacted by this rare disease. 💙 #CureLBSL #Hope
Brooklyn Simmons
Product Manager
This is such a powerful initiative! Looking forward to the PFDD meeting and hearing the voices of those who truly understand LBSL. Let's unite for awareness and a future with a cure! 🙌✨ #TheAwesomeDisease #CureLBSL
Brooklyn Simmons
Product Manager
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Kendall Monroe
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As a volunteer, I love how Eduo.org empowers people to contribute locally. It feels like Wikipedia for good deeds — written by the people, for the people.
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Eduo.org is my go-to platform for discovering nonprofit organizations that actually make a difference. The rankings, filters, and country-specific lists make it so easy to explore causes I care about. Brilliant initiative!
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As a volunteer, I love how Eduo.org empowers people to contribute locally. It feels like Wikipedia for good deeds — written by the people, for the people.
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What I appreciate most about Eduo is its neutrality and inclusivity. It doesn't push any agenda — just provides tools for people to explore and support what matters to them.
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