Celebrate 15 years of progress in the fight against Lafora disease.

Please join us on Monday, September 23rd at 6 pm to acknowledge our history and milestones. The dinner will begin after the first day of the 2024 Lafora Science Symposium.

Symposium attendees are all invited to join us for the special dinner. We ask that you register through here, because it will be a ticketed event. We also extend invitations to our community and supporters in the Southern California area.

Honor Linda Gerber and the founding families

We owe so much to those who came before. Chelsea's Hope seeks to honor our trailblazing families on September 23.

Reflect on our Lafora heroes

We will celebrate the lives of all the children we lost recently. It's been an incredibly hard year for the Lafora community, so as we gather, we will reflect on our Lafora heroes.

About Chelsea’s Hope Lafora Children Research Fund

What is Lafora disease?

Lafora disease is a rare neurodegenerative condition affecting one in 10 million children. Symptoms include epilepsy, ataxia, childhood dementia, cognitive decline, and difficulty speaking, walking, and eating. There is currently no cure; the disease is always fatal.

Our History

As the only U.S.-based patient advocacy organization for Lafora disease, Chelsea’s Hope began as a website in the fall of 2007 to share Chelsea Gerber’s Lafora story with her family and friends.

Chelsea was spirited, joyful, and curious. She loved life in a big way. Chelsea was well known for her enthusiasm, big laugh, and willingness to participate in everything. She played softball and enjoyed learning in school.

In 2005, Chelsea was diagnosed with Lafora disease. She was only 15. Because of the rapidly progressive disease, Chelsea lost her ability to speak, walk, or care for her basic needs. Chelsea passed in December 2016 at age 26.

Chelsea's Hope became a 501(c)(3) organization in 2009, dedicated to honoring Chelsea as we aim to improve the lives of those affected by Lafora disease by raising awareness, connecting families worldwide, and accelerating research.

Our Mission

Our mission is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. To do so, we raise awareness about Lafora. Chelsea’s Hope also provides connection and assistance for families through education, emotional support, and general assistance.

Our Vision

We envision a world where treatment options can accompany a Lafora disease diagnosis. We aim to reach a cure and reduce the diagnostic odyssey that Lafora patients face.

Our Impact

Chelsea’s Hope Lafora Children Research Fund strives to create a community for Lafora disease families and help find treatments. We are proud to be the first Lafora disease advocacy group that brought together families from around the world. We also partner directly with biotech and industry partners to advance treatments. Chelsea’s Hope has also:

● Raised $5.5 million for Lafora disease research since 2007
● Engaged an audience of 2k+ through social media networking
● Fostered the Lafora Disease Families Facebook group
● Hosted and co-hosted the annual international Lafora Disease Science Symposiums
● Facilitated the Lafora Disease Research Roundtables
● Assisted with recruitment for a natural history study in 2019.
● Been a Chan Zuckerberg Initiative Rare As One Grantee
● Received a 2022 #RAREis Global Advocate Grant Award from Horizon Therapeutics
● Been awarded a 2023 Patient-Partnered Collaborations for Rare Neurodegenerative

Disease RFA
● Coordinated the application for ICD-10 Codes for Lafora disease. Lafora disease was

awarded the unique code G40.C in 2023.
● Achieved the Platinum Transparency 2024 seal from Candid.

Symposium Formal Dinner

Celebrating 15 Years of Progress