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Five members of the Chelsea's Hope Board of Directors smiling and standing together.

Apply to Join the Board of Directors!

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Apply to join our Board of Directors for the 2025-2026 term!

Five members of the Chelsea's Hope Board of Directors smiling and standing together.

Chelsea’s Hope Board members at Symposium 2024.

The Board of Directors includes 5-9 individuals who meet monthly to review, plan, and distribute resources to further the organization’s mission. The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. The organization’s leadership team is fully remote, with some conference travel. Members of the Board of Directors may serve up to two consecutive terms in their respective positions. Each term is two years long and starts in January on odd-numbered years (i.e. the next term begins January 2025).

Members of the Board of Directors are expected to:

  • Attend the monthly board meetings (of which four are mandatory)
  • Serve on at least one committee for the organization
  • Be willing to assist with special events at the organization, including but not limited to our Annual Symposium, Family Q&A Sessions, conference presentations, and fundraising events.

The Board of Directors comprises a President, Vice President, Secretary, Treasurer, and up to five At-Large Members. At-Large Members must fulfill the requirements described above.

Finally, you can find more details about the responsibilities and duties of the Board of Directors HERE.

Application requirements

Apply to join the Board by Friday, November 29th. The organization will contact applicants in December with more information. Please fill out our Google Form and include your CV or resumé.

Are you interested?

Yes, I’m interested!
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.

Tag Archive for: board of directors