Entries by Chelsea's Hope

Lafora Therapy Q&A Resources

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Thank you to everyone who joined our recent Lafora Disease Therapy Q&A sessions. We are grateful for the thoughtful questions families submitted and for the continued advocacy, patience, and hope within this community. During the sessions, we reviewed several new resources created to help explain the current Lafora disease therapy landscape, where different therapies stand […]

Student Ambassador Applications Open

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Announcing a new program for student volunteers looking to support the Lafora community! If you are a current university student in the United States, consider applying for our Student Ambassador Program this fall. Student Ambassadors will be trained to host events on their campus to raise awareness and funding for Lafora disease research. Applications for the fall semester are open from now […]

Social Security Added Lafora to Compassionate Allowances List

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Big news for the Lafora community in the United States! The Social Security Administration (SSA) added Lafora disease to its Compassionate Allowances List. U.S. Lafora patients can qualify for disability benefits faster through the Compassionate Allowances List. In fact, SSA says your application would be “moved to the front of the line.” The SSA reported that […]

ION283 to be Developed by Elpida Therapeutics

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Exciting news for the Lafora community!  Ionis reached an agreement for the future of the ION283 asset with Elpida Therapeutics. Terry Pirovolakis, CEO of Elpida Therapeutics, asked us to share this letter with the Lafora community to introduce their company and their plans for ION283. You can read the letter here:  Chelsea’s Hope is committed […]