Help Lafora Patient Zaina and Family Evacuate Gaza

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Zaina smiling in a wheelchair with bags in the background Lafora patient Zaina and her family want to evacuate Gaza; donate to their GoFundMe today.

A 17-year-old from Gaza City has Lafora Disease.

Zaina sat facing away from the camera with bags in the backgroundHer entire family has been bombed, and they evacuated their home. They have moved across Gaza several times to escape the fighting. They have been displaced into a shelter and ran out of the best seizure medication for Zaina. Her family was able to switch epilepsy medications, but it’s not as effective. She needs proper medical treatment and a peaceful home.

Zaina’s mom shared some of their life, messaging, “There is nothing in pharmacies…There is no clean place here. We eat with the lids of cans, and I am careful when using them so as not to harm her. Everything is bad…”

Zaina’s uncle started a GoFundMe to help evacuate his family. You can give directly his efforts to get them through the Rafah crossing.

Yes, I want to help.

The video below shows Zaina last week. Her Lafora symptoms are progressing

Giving Tuesday November 28 Donate. Fundraise. Be generous.

2023 Annual Letter

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Below is Chelsea’s Hope annual progress update and appeal from our President, Frank Harris, Ph.D. If you did not receive a copy of the 2023 annual letter by email or direct mail, please email us. Then, we will get you set up for the future.

Read the Letter

Dear community, 

As we approach the end of another transformative year, we want to express our heartfelt gratitude for your unwavering support of Chelsea’s Hope. We have made significant strides toward our shared vision of a world with a cure for Lafora Disease. 

We are proud to share the progress we’ve achieved together in 2023. Your generosity has enabled us to expand our research network around the globe. Through the efforts of Chelsea’s Hope, Lafora Disease has been formally recognized by the International Classification of Diseases with an ICD-10 code. Chelsea’s Hope was awarded a grant in partnership with researchers at the University of Texas, Southwestern, and we co-hosted the 2023 Science Symposium. Chelsea’s Hope also started a Research Roundtables series, volunteer program, and sibling support program, all aligned with our mission of improving the lives of those affected by Lafora Disease.

The impact of your support is tangible: you have led us here. Your belief in our mission to help accelerate the development of treatments has fueled our determination despite the obstacles we’ve faced. There is still more we can achieve. 

We kindly ask for your continued support as we close out 2023. This year, Chelsea’s Hope is raising $20,000 by January 1, 2024, so we can continue expanding and maintaining a strong, collaborative, and actionable research network. By doing so, we will be closer to starting a clinical trial. 

Lafora Disease progresses quickly, and time is never on our side. We hope you will be. 

Your donation is more than a financial contribution. It is an investment in saving the lives of the hundreds of children and their families fighting this terrible disease.

We are so grateful to be able to count on you to help our children struggling today and to honor the legacy of those we lost. Thank you for being an essential part of our work. You are building a better future for all affected by Lafora Disease.

I wish you and your loved ones a joyous holiday season and a happy new year.

With Hope, 

 

 

 

Frank Harris, Ph.D. – President

Chelsea’s Hope Lafora Children Research Fund

Post Office Box 348626, Sacramento, CA 95834

info@chelseashope.org

Reach a Cure for Lafora Disease

Your support allows us to continue the vital work we do to reach a cure. This year-end, you can create your own fundraiser to help us reach our goal. Double your impact when you donate, because a generous community leader has offered a $10,000 match for every gift made before December 31, 2023.

Donate here
Silver Transparency 2023 Candid.

Chelsea’s Hope Earns 2023 Silver Seal

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Silver Transparency 2023 Candid. This is a seal for Chelsea's Hope.

Chelsea’s Hope is thrilled to announce we’ve just earned our 2023 Silver Seal from Candid! We are excited to share the work our nonprofit does through our Guidestar nonprofit profile.

We want to ensure you have the progress updates you need to support our work with trust and confidence. Chelsea’s Hope is committed to our vision of a world with a cure for Lafora Disease. Your contributions make our work possible. When you donate, know we continue to operate with transparency. Chelsea’s Hope will also continually update our profile now that we have the 2023 Silver Seal. Thank you for supporting our mission of improving the lives of those affected by Lafora Disease and helping accelerate the development of treatments.

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.