The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 non-profit organization. EIN: 27-1008382
Chelsea’s Hope c/o Dr. Donohue
976 Maywick Dr.
Lexington, KY 40504
Use ICD-10 code G40.C for Lafora.


ION283 to be Developed by Elpida Therapeutics
/by Chelsea's HopeExciting 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 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.
Update on the ION283 Program from Telethon
/by Chelsea's HopeDear Members of the International Lafora Patient Community,
Following our previous communications, we would like to provide an important update regarding the ION283 program.
We have been informed that Ionis has decided to transfer the development rights of ION283 to another organization, different from Fondazione Telethon. As this decision rests entirely with Ionis, it is not under our control, as we have consistently clarified in our previous updates.
From the outset, our only priority has been — and will remain — to ensure that people living with Lafora disease have a real opportunity for a therapeutic option: in this spirit, we have donated all the work and materials developed over the past months to the organization identified to continue the program, in order to facilitate the fastest possible progress.
We are fully aware of the sense of urgency experienced by families and of how deeply time matters in the context of this disease. For this reason, we believe that enabling continuity — regardless of the actors involved — is the most responsible choice in the best interest of patients.
At the same time, we wish to reiterate Fondazione Telethon’s close commitment to the Lafora community: we will continue to support scientific research through the avenues that can best safeguard all patients, in full respect of internationally recognized standards, regulatory requirements, and the principles of scientific rigor and excellence.
Please be assured that we have done — and will continue to do — everything within our reach to support the Lafora community.
We remain close to you and committed to sharing further updates as soon as reliable information becomes available.
With respect and commitment,
Alessandra Camerini
Head of Relations with Patients and Patient Organisations
Introducing the Lafora Clinical Network Registry
/by Chelsea's HopeChelsea’s Hope is proud to announce the launch of the Clinical Network Registry, a centralized resource connecting patients and families to trusted providers dedicated to Lafora disease care.
We are excited to announce the launch of the Chelsea’s Hope Clinical Network Registry, a new initiative as part of our Centers of Excellence project, dedicated to connecting patients and families with trusted providers who have experience or interest in treating Lafora disease.
The goal of this registry is to identify clinicians who are committed to advancing the diagnosis, treatment, and holistic management of Lafora disease through coordinated care, patient advocacy, and collaborative expertise. The Lafora Clinical Network will serve as a trusted, centralized resource connecting patients and families to providers with experience or dedicated interest in Lafora disease, ensuring access to knowledgeable, high-quality care.
We invite clinicians to join our network by completing the Clinician Application, where you can share your experience, areas of expertise, and how you would like to connect with patients and families. We also welcome referrals from patients, families, and fellow clinicians through our Referral Form, helping us identify providers who deserve a place in this growing network.
As we build this registry together, we hope to invite the community to help review and shape our standards of care, ensuring this network reflects the needs and experiences of those it supports.
Questions?
Whether you are a clinician ready to join or a family who knows a provider who should be part of this network, we would love to hear from you. Reach out to us at info@chelseashope.org. Thank you for your support of Chelsea’s Hope and your commitment to advancing care for Lafora patients.
Meet our 2026 Summer Interns!
/by Chelsea's HopeWe are thrilled to welcome 16 new interns this summer, supporting the mission through fundraising, creating resources, new webpages, and supporting research and clinical activities.
With backgrounds from pre-med tracks at their schools to studying public health, they are bringing us valuable assistance to drive many projects forward. Keep reading to meet the new team members!
Clinical Support Interns
Communications Interns
Fundraising Support Interns
Research Support Interns
Sara Ghoddoussi graduated with her Bachelor of Science in Neuroscience from Wayne State University, with dual minors in Economics and Public Health. In the fall, she will begin pursuing a Master of Public Health in Health Behavior and Health Equity, along with a certificate in Public Health Genetics, at the University of Michigan. Sara is passionate about genetics, rare disease advocacy, community engagement, and improving access to health education.
Interns United for our Mission
Our summer team members are committed to improving the lives of those affected by Lafora disease and helping accelerate the development of treatments. Please join us in welcoming everyone as they assist with projects this summer, and don’t hesitate to contact us if you have any questions.