Apply to Join the 2027 Board of Directors!

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Apply to join our Board of Directors for the 2027-2028 term by November 13th!

Members of the Chelsea’s Hope Board of Directors at the 2026 Symposium.

The Board of Directors meets monthly to review, plan, and distribute resources to further the organization’s mission, to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. Members of the Board of Directors may serve up to two consecutive terms in their respective positions. The next two-year term begins in January 2027.

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.

You can find more details about the responsibilities and duties of the Board of Directors HERE.

Application requirements

Apply to join the Board by November 13th. 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!
Coffee for Chelsea's Hope Lafora Children Research Fund September 24-October 8, 2026 Donate the amount of a coffee to fuel the fight against Lafora disease.

Press Release: United Against Lafora, Families Worldwide Raise Awareness

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October 1st will be the 6th annual awareness campaign for Lafora disease.

SACRAMENTO, Calif. – September 24, 2026 – Chelsea’s Hope Lafora Children Research Fund announced that October 1st, 2026, is the 6th annual Lafora Body Disease Day. The organization will raise awareness to support children fighting for their lives, find answers for families feeling overwhelmed, and accelerate the development of treatments for Lafora.

Lafora disease is an ultra-rare, terminal neurodegenerative disorder that primarily affects children and adolescents. It is a genetic condition in which patients cannot maintain a normal glycogen concentration, resulting in a toxic accumulation of glycogen, called Lafora Bodies, in the heart, spine, and brain. Symptoms can include epilepsy, childhood dementia, and progressive difficulty with talking, walking, and eating. Children who appear healthy often begin experiencing symptoms in early adolescence, and most die within 10 years after seizures begin. Lafora disease affects approximately 1 in 5 million people worldwide. There is currently no cure for this disease; it is terminal. Chelsea’s Hope aims to accelerate the development of treatments and ensure families can access information at every step of their journey. Lafora research and potential treatments are rapidly advancing, but as with many rare diseases, the community faces a funding barrier to getting potential therapies to the clinic.

Chelsea’s Hope is a key supporter of the first clinical trial for a potential ASO therapy for Lafora patients (ION283), organizing fundraising to cover the clinical costs of the investigator-led Safety Study and Phase I trial at UT Southwestern. 10 patients from around the world are now in the second year of the study with no safety complications. The community is working tirelessly to raise the final $170,000 needed to cover the clinical costs and allow all 10 patients to complete the two-year trial. The children in the trial cannot afford any delays from a shortage of funds, and the entire Lafora community anxiously awaits the results of the study. Hope is finally on the horizon with Elpida Therapeutics recently acquiring the license of ION283 with intentions to advance this potential treatment once the Safety Study is complete.

Jenifer Merriam, President of Chelsea’s Hope Board of Directors, shares, “My son is participating in the first-ever Lafora Safety Study, giving our family something we have desperately needed: hope. If ION283 can slow or stop the progression of Lafora disease, Ty could have the chance to pursue his dreams and avoid the devastating future this disease has taken from so many young people. This is our first real opportunity to change the course of Lafora disease; not just for Ty, but for his older sister and every family affected by this devastating disease. We cannot afford to lose this opportunity.”

Your support can make a difference to help families access information, training, and resources in their fight against Lafora. Donate to help accelerate the development of treatments and bring hope to patients and their loved ones worldwide: https://givebutter.com/lafora-body-disease-day-2026

Finally, to mark 2026 Lafora Body Disease Day, Chelsea’s Hope encourages individuals and organizations to help spread awareness of Lafora through social media. Templates are available for downloading and sharing here. Supporters are encouraged to use #FightLafora and tag @chelseashopelaforacure when they post.

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Chelsea’s Hope Lafora Children Research Fund started in 2007 after Linda Gerber and a small group of dedicated friends developed a website to share her daughter Chelsea’s Lafora story. Since its founding as a 501(c)3 in 2009, Chelsea’s Hope has partnered with dozens of organizations and hundreds of families worldwide to provide support, raise awareness, and advocate for the Lafora community.

Today, the mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. We envision a future where families can access treatment as soon as they are diagnosed. Contact info@chelseashope.org for press inquiries.

DOWNLOAD PRESS RELEASE
Last updated August 2026. L I V I N G W I T H L A F O R A A N T I - S E I Z U R E M E D I C A T I O N G U I D E L I N E S Expert opinion from Lafora Clinical Working Group, Chaired by Dr. Roberto Michelucci. Lafora disease is a rare and progressive form of epilepsy, and families are often told early on that seizure control will require more than one medication and ongoing adjustment over time. This expert opinion summarizes the discussion and survey results from a clinical working group of physicians experienced in treating Lafora disease. It is intended to give families a starting point for discussion with their own healthcare providers. Disclaimer: This article reflects the opinions and survey responses of a clinical working group and is shared for general informational purposes only. It is not medical advice and should not replace guidance from your own healthcare provider. Please review this information with your doctor before making any changes to a treatment plan. ANTI-SEIZURE MEDICATIONS FAVORED FOR LAFORA DISEASE When managing seizures in Lafora disease, clinicians routinely combine multiple anti- seizure medications (ASMs). When selecting which medications to combine for a patient, the clinician considers the efficacy of each drug, as well as the potential side effects. They will also take into account possible drug-drug interactions, the age of the patient, their weight and mental health. Therefore, seizure management may look very different for each patient, which is why it is important to consult with your personal physician. However, the clinical working group determined that the following medications are most commonly used as first-line treatments: Levetiracetam, valproic acid, and perampanel are typically the first medications prescribed for newly diagnosed patients Clonazepam is frequently used in everyday treatment plans, largely for its effect on myoclonus. It is also commonly used as a rescue medication when symptoms worsen Brivaracetam, topiramate, and zonisamide are frequently added to a seizure treatment regimen, often to help reduce myoclonus Phenytoin may be useful for short-term treatment of status epilepticus, but it is not recommended for long-term, chronic use MEDICATIONS GENERALLY AVOIDED IN LAFORA DISEASE Certain Anti-seizure medications, like sodium-channel blockers, are usually avoided because they can worsen myoclonus or fail to control seizures effectively. Some examples include: Carbamazepine Phenytoin (becomes a problem with chronic, ongoing use) Lamotrigine Gabaergic drugs Most anti-focal ASMs PLANNING FOR EMERGENCIES Status epilepticus, prolonged or repeated seizure that doesn't stop on its own, is a medical emergency. Clinicians most commonly reported the use of clonazepam or midazolam as first-line emergency treatment, sometimes followed by levetiracetam, brivaracetam, perampanel, or valproic acid or phenytoin in refractory cases. Every family should have a written seizure action plan in place. This helps ensure that emergency responders and caregivers know what to expect and how to respond, and may help avoid unnecessary ICU admissions. chelseashope.org | info@chelseashope.org | @chelseashopelaforacure | Chelsea’s Hope, 976 Maywick Dr. Lexington, KY 40504Chelsea's Hope Lafora Children Research Fund

New Resource: Lafora Anti-Seizure Medication Guidelines

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Last updated August 2026. L I V I N G W I T H L A F O R A A N T I - S E I Z U R E M E D I C A T I O N G U I D E L I N E S Expert opinion from Lafora Clinical Working Group, Chaired by Dr. Roberto Michelucci. Lafora disease is a rare and progressive form of epilepsy, and families are often told early on that seizure control will require more than one medication and ongoing adjustment over time. This expert opinion summarizes the discussion and survey results from a clinical working group of physicians experienced in treating Lafora disease. It is intended to give families a starting point for discussion with their own healthcare providers. Disclaimer: This article reflects the opinions and survey responses of a clinical working group and is shared for general informational purposes only. It is not medical advice and should not replace guidance from your own healthcare provider. Please review this information with your doctor before making any changes to a treatment plan. ANTI-SEIZURE MEDICATIONS FAVORED FOR LAFORA DISEASE When managing seizures in Lafora disease, clinicians routinely combine multiple anti- seizure medications (ASMs). When selecting which medications to combine for a patient, the clinician considers the efficacy of each drug, as well as the potential side effects. They will also take into account possible drug-drug interactions, the age of the patient, their weight and mental health. Therefore, seizure management may look very different for each patient, which is why it is important to consult with your personal physician. However, the clinical working group determined that the following medications are most commonly used as first-line treatments: Levetiracetam, valproic acid, and perampanel are typically the first medications prescribed for newly diagnosed patients Clonazepam is frequently used in everyday treatment plans, largely for its effect on myoclonus. It is also commonly used as a rescue medication when symptoms worsen Brivaracetam, topiramate, and zonisamide are frequently added to a seizure treatment regimen, often to help reduce myoclonus Phenytoin may be useful for short-term treatment of status epilepticus, but it is not recommended for long-term, chronic use MEDICATIONS GENERALLY AVOIDED IN LAFORA DISEASE Certain Anti-seizure medications, like sodium-channel blockers, are usually avoided because they can worsen myoclonus or fail to control seizures effectively. Some examples include: Carbamazepine Phenytoin (becomes a problem with chronic, ongoing use) Lamotrigine Gabaergic drugs Most anti-focal ASMs PLANNING FOR EMERGENCIES Status epilepticus, prolonged or repeated seizure that doesn't stop on its own, is a medical emergency. Clinicians most commonly reported the use of clonazepam or midazolam as first-line emergency treatment, sometimes followed by levetiracetam, brivaracetam, perampanel, or valproic acid or phenytoin in refractory cases. Every family should have a written seizure action plan in place. This helps ensure that emergency responders and caregivers know what to expect and how to respond, and may help avoid unnecessary ICU admissions. chelseashope.org | info@chelseashope.org | @chelseashopelaforacure | Chelsea’s Hope, 976 Maywick Dr. Lexington, KY 40504We have a new resource for families developed by some members of our Lafora Clinical Network: Anti-Seizure Medication Guidelines. This document provides information to help Lafora families discuss seizure management with their clinicians.

Special thanks to the clinical working group led by Dr. Roberto Michelucci, who put together these guidelines. You can now download the document to your device, or print a copy to reference. Please check back for updates.

View Guidelines Right-open Right-open

Guidelines created in August 2026.

 

Join in Lafora Body Disease Day 2026!

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It’s that time of year again! We recognize October 1, 2026, as Lafora Body Disease Day.

Chelsea’s Hope will raise awareness to support children fighting for their lives, find answers for families feeling overwhelmed, and accelerate the development of treatments.

We need your participation to make it a success! Creating awareness is key to more research, better support, and a brighter future for families facing Lafora disease. Keep reading for resources and ways to get involved.

Awareness Video

We want to make a “United against Lafora” awareness video, including families, patients, and organizations who can participate from around the world.

If you can join, please email us a short video where you say “United against Lafora” in your language. Include your name and country in the email. Chelsea’s Hope will edit a compilation video and share it publicly on October 1st.

We want as many nationalities and voices represented as possible, but so it doesn’t get too long, we will update this post with those already shared as we receive submissions: Palestine, Slovakia, Bahrain, United States, Poland, Italy, France.

If your nationality is already represented, don’t worry! There are many other ways to join in raising awareness…

Other Ways to Raise Awareness

We invite you to create awareness on October 1 by sharing your story, the stories of the Children of Chelsea’s Hope, educational posts, or encouraging others to watch the Fighting the Rare documentary. 

Families, we encourage you to contact your local news networks to see if they will feature your story. You can email us if you would like support in sharing your story with press outlets.
We invite everyone to join the #FightLafora social media challenge…

#FightLafora Social Media Challenge

One way to raise awareness on Lafora Body Disease Day 2026 is to join the #FightLafora social media challenge. We love seeing how you’ve used the hashtag on your posts and will reshare what we can!

Want to join? Here are the steps:
1. Write “United against Lafora” in your language (this can be holding up a sign, by creating a painting, on the side of your coffee cup…)
2. Take a photo (bonus if you’re wearing purple or your Chelsea’s Hope gear)
3. Share it on your social media
4. Tag us or DM us your photo! Use #FightLafora

+ You can also tag three friends to join the challenge to create awareness about Lafora.


Coffee for Chelsea’s Hope Fundraiser

October 1st is also International Coffee Day, which is why we have a unique fundraiser this year: Coffee for Chelsea’s Hope.

We are asking supporters near and far to donate the amount of your typical drink to advance our mission. Your $5 gift (or $10, we see you, Venti lovers) might not cost you much, but will make a big impact for our cause.

The campaign will run from September 24-October 8, 2026. We will have a special coffee lovers’ giveaway for supporters on October 9, too! 

Finally, you can host your own Coffee for Chelsea’s Hope fundraiser by clicking that “Fundraise” button on our campaign. One idea is bringing coffee into your break room at your office and asking for donations for every cup. Another idea for college students is tabling on your campus. Email us with any questions, and we will be happy to support your fundraiser however we can. Join here!

This annual effort to raise awareness about Lafora is one step toward achieving our mission of improving the lives of those affected by the devastating rare disease and helping to accelerate the development of treatments. Thank you for raising your voice. Together, we can fight Lafora!