This is the Platinum Seal of Transparency from Candid. It has a platinum border, white square center, and text that says 'Platinum Transparency 2025 Candid.'

Chelsea’s Hope Earns Platinum Seal of Transparency for 2025

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This is the Platinum Seal of Transparency from Candid. It has a platinum border, white square center, and text that says 'Platinum Transparency 2025 Candid.'Chelsea’s Hope is excited to announce we’ve just earned a Platinum Seal of Transparency from Candid for 2025!

We invite you to check out our nonprofit’s work through our Candid nonprofit profile; where you can view our impact.

We rely on our profile to gather support; it enables funders and donors to find us and learn about our impact. We’ll keep our profile updated so you can see what your donations help us accomplish. Recently, we shared information about our mission, programs, results, financials, and operations.

Chelsea’s Hope wants to ensure you have the progress updates you need to support our mission with trust and confidence. Your contributions make a real difference. You can donate knowing our commitment to operating with the highest level of transparency, as evidenced by our achievement of the Platinum Seal for 2025.

What’s next? 

In 2025, we plan to host three more Research Roundtables and support the Lafora Disease Science Symposium. We must fully fund the safety study to enroll all the eligible patients, too. As always, we will champion the amazing Lafora community and take every step forward to treatments for our children. Finally, you can look forward to monthly family support groups.

Thank you for your belief in our cause!

20252-2026 Welcoming a New Board of Directors Katrina Voe Cotton Vice President Roderick Howard At-Large Member

Chelsea’s Hope Welcomes 2025-2026 Board of Directors

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Chelsea’s Hope is pleased to announce the 2025-2026 Board of Directors: Jenifer Merriam (President), Dr. Katrina Voe Cotton (Vice President), Sheila Barter (Treasurer), Meredith Williams (Secretary), Niki Markou (At-Large Member), Roderick Howard (At-Large Member), and Nadia Ismail (At-Large Member).

New to Chelsea’s Hope are Vice President Katrina Voe Cotton, MD, PhD, and At-Large Board Member Roderick Howard.

Headshot of Katrina Voe Cotton, MD PhD

Dr. Katrina Voe Cotton, Vice President

Dr. Cotton shared, “I feel incredibly fortunate to have joined the Lafora community at such an exciting time. With the safety study now underway at UT Southwestern, we are on the brink of a new era for Lafora patients. I’m eager to leverage my experience and knowledge to help navigate this exciting journey ahead.”

Headshot of Roderick Howard

Roderick Howard, At-Large Member

Roderick, a longtime nonprofit leader, also said, “I am grateful for the opportunity to serve an organization that aligns with my interests in public health and children’s support.”

Dr. Cotton and Roderick bring a wealth of management and development skills along with a passion for making a difference in the Lafora community. We look forward to their guidance and expertise in advancing the mission of Chelsea’s Hope. You can read more about the Board of Directors on our Leadership Team page. 

Finally, we want to express our heartfelt gratitude to Dr. Frank Harris for his leadership as the previous President of the Board of Directors. He had a talent for making newly diagnosed families feel supported and devoted a decade to serving the Lafora community with Chelsea’s Hope. Many of our current board members credit Frank for welcoming them to the organization and encouraging them to join. While he stepped down from the board, he remains a steadfast member of our community.

In Memory of Dr. Joan Guinovart

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Headshot of Dr. Joan J. GuinovartWe are deeply saddened by the loss on January 1st, 2025, of Professor Dr. Joan Guinovart — founder, former director, former researcher, and professor of IRB Barcelona, an international research center devoted to curing cancer and other diseases linked to aging. He was a brilliant scientist and a wonderful human being. Dr. Guinovart’s research was primarily concerned with glycogen, starting with a study of the effects of insulin on glycogen synthase and eventually leading to the study of Lafora disease, a debilitating disease characterized by the accumulation of abnormal glycogen. His research was instrumental in identifying a therapeutic target to treat patients with Lafora disease.

The team at Chelsea’s Hope is extremely thankful for Dr. Guinovart’s research and the milestones he created to get us to treatments. He will be missed by many in our Lafora community. We are sending our condolences to his family and friends.

Jenifer smiling behind an AES sign

Chelsea’s Hope Attended the 2024 Annual Meeting of the American Epilepsy Society

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Jenifer smiling behind an AES signVice President Jenifer Merriam represented Chelsea’s Hope at two back-to-back conferences. From conversations with other leaders about improving organizational structure, to learning about the resources and knowledge available for the rare epilepsy community, it was a powerful event.

2024 Partners Against Mortality in Epilepsy (PAME) Conference

The first day of the PAME conference, Jenifer joined other families affected by epilepsy and advocates in programming focused on navigating grief. While it was heavy, Jenifer came away with new connections and ideas about how Chelsea’s Hope can better support bereaved Lafora families.

The second day of PAME was scientific conference sessions.

We extend our heartfelt thanks to the Danny Did Foundation, who supported Jenifer’s travel to the PAME conference. Danny Did works to raise awareness and support families affected by Sudden Unexpected Death in Epilepsy (SUDEP), in honor of Danny Stanton They also provide grants for seizure devices. 

“The most impactful part of attending was connecting with other rare epilepsy advocates and stakeholders to advance Chelsea’s Hope’s goals.”

Michaelle Jinnettee and Jenifer Merriam smiling in front of Rare Epilepsies Network banners

Michaelle Jinnettee with Cure KCNH1 Foundation and Jenifer Merriam at the Rare Epilepsy Network booth at the 2024 AES Annual Meeting.

2024 Annual Meeting of the American Epilepsy Society (AES)

Jenifer was a voice for the Lafora disease community at AES while engaging with pharmaceutical representatives, clinicians, and umbrella epilepsy advocacy organizations. She also attended the Rare Epilepsy Network luncheon which provided opportunities to network with other leaders in the rare epilepsy space.

“I saw a video of a patient who went from using a wheelchair to walking independently after receiving ASO treatments in an n-of-1 trial. It made me feel hopeful that we are now treating Lafora patients with our own ASO therapy.

AES provided an opportunity to network with others in the epilepsy space and gather cutting-edge information about treatments, research, and best practices in the epilepsy community. I am so grateful that I attended.”

Dr. Antonio Delgado-Escueta Won the AES’s 2024 Founders Award

Selfie of Jenifer Merriam and Dr. Antonio Delgado-Escueta

We want to celebrate Dr. Delgado-Escueta for this prestigious award! We are very thankful he is a member of the Chelsea’s Hope Advisory Board and for all his important collaborative work to find a cure for Lafora disease.

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