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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.

Headshot of Jenifer Merriam smiling in a red dress.

Announcing Vice President Jenifer Merriam

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Headshot of Jenifer Merriam smiling in a red dress.Meet the Board of Director’s Vice President, Jenifer Merriam

Jenifer Merriam is a mother of two children, Anissa and Ty, affected with Lafora Disease. At her daughter’s diagnosis in 2016, she was told there were no treatments or cures. She left that appointment hopeless and not sure what to do. Jenifer began the isolating journey of being a Lafora parent with a need to connect with other families suffering from this horrific disease and a desire to do something to help save her daughter. She researched more about Lafora Disease and soon found Chelsea’s Hope Lafora Children’s Research Fund. Shortly after that, she attended her first symposium and began connecting with families, researchers, and doctors within the organization.

Obtaining our ICD-10 Code

Jenifer joined the board in 2018 as a liaison to the Rare Epilepsy Network and the Epilepsy Leadership Council. She also served as the research director and spearheaded obtaining an ICD-10 code for Lafora Disease. This code became official on October 1, 2023. The ICD-10 code is something that Jenifer is very proud to have been a part of.

“Our Lafora ICD-10 code will be beneficial to our entire Lafora community by helping to accurately capture and track prevalence, enhance research efforts, and aid in proper diagnosis, treatment, and services to patients.”

From Parent Lead to Vice President

Jenifer has also served as parent lead and facilitated parent groups within Chelsea’s Hope to connect Lafora families for support. She stepped away from being a business owner to provide full-time care to Anissa after her diagnosis. As Vice President, Jenifer looks forward to using her leadership experience and skill set to help advance the organization’s mission to make the impossible-POSSIBLE!

Finally, Jenifer’s daughter, Mariah Merriam, is her only child without Lafora Disease. Mariah is also involved with Chelsea’s Hope. She was an instrumental part of the ICD-10 code process and currently leads the sibling support group for Chelsea’s Hope.

We hope you will join us in congratulating Jenifer on her new position on the Board. She got involved with Chelsea’s Hope to advocate for her children, find treatment options, and make an impact for all the children and families living with Lafora Disease. Jenifer has certainly made a positive impact, and we are thankful for her continued work for our organization and on behalf of every Lafora family.

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