Chelsea's Hope Student Ambassador

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 until 11:59 PM EDT on Tuesday, September 8th. Read more below about the initiative.

Apply Here


Student Ambassador Program Overview

The Student Ambassador program is a semester-long volunteer initiative that will be self-paced with guidance from our Scientific and Executive Director. Student Ambassadors will be responsible for developing an awareness and fundraising campaign at their university to support Lafora disease research and are expected to attend monthly group meetings. The student ambassador will become a liaison on their campus for the work being done at Chelsea’s Hope. Student ambassadors should expect to work an average of 10 hours per month on the project and set a fundraising goal of $250. The length of the program is one semester starting in September. Download the position description here.

Email katherine@chelseashope.org with questions.

text says "social security" on a piece of paper in a typewriter

Social Security Added Lafora to Compassionate Allowances List

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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 Lafora is now one of 314 serious medical conditions on the list, and “since the initiative started, over 1.2 million people have been approved.” This action should speed up the process for Lafora families seeking disability benefits.

We hope this decision helps families around the world access similar government support. Chelsea’s Hope anticipates more funding opportunities for the Lafora disease community to advance research, potential treatments, and improve patient care. We are grateful that the SSA recognizes the urgency we face.

Elpida Therapeutics’ Press Release

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Elpida Therapeutics released a press release about acquiring ION283 and advancing this potential therapy. We are fortunate that Terry shared a letter with us earlier in the week.

For more information about the nonprofit biotech company and the license transfer from Ionis, you can read the press release that Elpida Therapeutics sent out here.

Read Press Release

Please direct any questions about ION283, Elpida Therapeutics, or the Safety Study to ion283@chelseashope.org.

August 3, 2026 Letter from Terry Elpida Therapeutics

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: 

Read Letter

Chelsea’s Hope is committed to advocating for the Lafora community and helping accelerate the development of this potential treatment. Please direct any questions about ION283, Elpida Therapeutics, or the Safety Study to ion283@chelseashope.org, and we will get back to you.

As a reminder, Chelsea’s Hope will host a Lafora Therapy Q&A on August 11 at 1:30 PM EDT. This session will go over new resources we’ve recently shared about the Lafora therapeutic pipeline. Then, we will answer your questions submitted in advance of the meeting, ending with some time for questions and responses. We will use TransPerfect AI translation for captions. Please register in advance here.