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.


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.
Updates for the Lafora Therapy Pipeline: Requesting information from our Research Community
/by Chelsea's HopeAt our 2025 Lafora Symposium, several of the Lafora patient organizations decided to work together to better support therapy development for Lafora disease.
To help us prioritize therapies to support, we are requesting periodic updates on novel and repurposed therapies in development for Lafora. If you are a clinician or researcher working on a Lafora Therapy, please complete this form so that we can educate families about your research and determine the best way to support the development of your therapy.
Submissions will be reviewed by A.I.L.A., Cel-Luz Association, Chelsea’s Hope, France Lafora, and TempoZero.
Telethon’s Statement on the ION283 Clinical Trial Pathway for Lafora
/by Chelsea's HopeFondazione Telethon has kindly provided Chelsea’s Hope and the other advocacy organizations with a statement for the Lafora patient community. At their request, we are sharing the communication below:
Dear Members of the International Lafora Patient Community,
Fondazione Telethon remains open to contributing to the development of ION283 and to collaborating with partners in Europe and in the United States, provided that the highest ethical and scientific standards are upheld and that any decision is taken exclusively in the best interest of patients.
Fondazione Telethon acknowledges the complexity of the ION283 case, also from the perspective of Ionis, which currently holds the license for the compound.
The essential authorizations required to set up a clinical study in Italy fall within Ionis’ decision-making space. Therefore, at this stage, Fondazione Telethon cannot serve as the reference point or source of information regarding a possible future development path for ION283. The decision concerning the continuation, redesign, or activation of a clinical program is not under our direct control. Should concrete and reliable updates become available, we will share them promptly.
We are aware that several research groups, in different Countries, are actively conducting studies on Lafora disease: this reflects the commitment of the international scientific community to advancing knowledge and identifying potential therapeutic strategies.
While dealing with the hard work to ensure progresses in identifying therapeutic solutions, we respectfully invite families, associations, and researchers to bear in mind that the scientific pathway required to transform science in therapies does not allow for shortcuts. The timelines necessary to ensure safety, efficacy and compliance with regulatory standards cannot be compressed beyond what scientific rigor and ethical standards allow.
We are aware that this message may sound demanding. However, clarity is necessary to preserve families who are already facing extraordinary challenges and a sense of unpostponable urgency every day.
Our commitment remains firm: to pursue research with responsibility, scientific soundness, transparency, and deep respect for patients and their loved ones.
As a reminder, please email your questions or concerns to ion283@chelseashope.org.
2025 Annual Report
/by Chelsea's HopeChelsea’s Hope published our 2025 Annual Report! Inside, you’ll find a message from the President of the Board of Directors, Jenifer Merriam, and a summary of our impact in 2025. We also include a financial statement, goals for 2026 and beyond, and acknowledgments.
Thank you to our generous donors, committed research network, and courageous families for supporting Chelsea’s Hope last year. We appreciate your continued partnership to reach a cure!
Stay connected by signing up for our mailing list and following our social media for regular updates. We always welcome volunteers to support our cause and invite you to join Chelsea’s Champions with a monthly gift to support our work in 2026 and beyond.