Chelsea's Hope Lafora Children Research Fund

08/19/2026

What an uplifting story! Famous Indian actor Ram Pothineni video calls young 18 year old girl in India who has Lafora disease and offers to pay her medical expenses. What a lovely gesture to a beautiful girl in need. Read the article here

Shashibhavyata, a resident of Duppalapudi village in Anaparthi mandal, has been diagnosed with Lafora Myoclonic Epilepsy, a rare genetic neurological disorder

08/17/2026

Join Chelsea's Champions this to make a lasting difference for the Lafora community. 💜

When you sign up to contribute monthly to support our cause, your generosity will drive our mission! Your gifts will allow us to:
🤝 Provide free programs for families
🔬 Sustain treatment advancement efforts
🛠️ Aid resource development

For just $5/month, you can join a community of Champions, dedicated to curing Lafora disease. Are you in?

👉 Join here: https://givebutter.com/chelseas-champions

08/14/2026

📰 NEW POST: Social Security Added Lafora to Compassionate Allowances List

Lafora patients in the United States can qualify for disability benefits faster through the Compassionate Allowances List.

🔗 Read more: https://chelseashope.org/social-security-added-lafora-to-compassionate-allowances-list/

We hope this decision helps families around the world access similar government support. We are grateful that the Social Security Administration recognizes the urgency we face.

The Social Security Administration listed Lafora on Compassionate Allowances, allowing patients to qualify for disability benefits faster.

08/13/2026

featuring Ty, who recently completed a Safety Study visit!

Every visit is significant. Each one provides the research team with valuable data that helps guide dose escalation and determine whether ION283 is having the desired effect.

Ty’s participation in this study is giving him the opportunity to help the research team evaluate the safety and efficacy of the potential treatment alongside nine other patients from around the world. It has been safe in all 10 patients. The data collected through this study will help Elpida Therapeutics move this potential treatment forward, too!

While there are still unknowns, we remain deeply hopeful that the Safety Study will ultimately lead to treatment opportunities for ALL living with Lafora disease.

📸 Photo of Ty & Dr. Minassian, thanks to Jenifer.

📩 Families, please send us celebrations, stories, and photos for features.

08/07/2026

We leave a little purple wherever we go, and we take home HOPE after every Symposium. 💜

You can join us by registering for the 2026 Lafora Symposium! It's crucial to gather as families, researchers, clinicians, and patient advocacy organizations. We will also have an online option and share recordings with registrants. Together, we .

🔗 Register by September 1st to join in Dallas: https://givebutter.com/2026-lafora-disease-science-symposium

08/06/2026

🗺️ We're eager to build a global Lafora Clinical Network Registry! And we need your help to make it happen.

Our mission has always been to support our community, and this new global registry is designed to do just that! We want to connect Lafora disease patients with trusted, knowledgeable healthcare providers worldwide.

🤝 Let’s bridge the gap together. 👇

Families, do you know a doctor, specialist, or clinician who truly understands Lafora disease? Help us grow this vital resource! You can submit a referral directly through our website to ensure others can find the same high-quality care.

Clinicians, please fill in the form with details about the services you offer and locations where you can treat patients.

Learn more here: https://chelseashope.org/lafora-clinical-network-registry/

08/05/2026

Questions about potential Lafora therapies?

Chelsea’s Hope will host the second Lafora Therapy Q&A next week, on August 11 at 1:30 PM EDT. This session will go over new resources we’ve recently shared about the Lafora therapeutic pipeline and the recent development with ION283.

Then, we will answer your questions submitted in advance of the meeting. We will use TransPerfect AI translation for captions.

Please register and share your questions in advance here: forms.gle/RFjYAr3s96Tf1Gjs7

📍 Tuesday, August 11, 2026
🇺🇸 1:30 PM ET / 12:30 PM CT / 10:30 AM PT
🇬🇧 6:30 PM BST
🇪🇺 7:30 PM CEST / 8:30 PM EEST
🇵🇰 10:30 PM PKT
🇮🇳 11 PM IST
🇨🇳 1:30 AM CST, Wednesday, August 11
🇦🇺 3:30 AM AEST, Wednesday, August 11

08/03/2026

📢 Exciting news for the Lafora community! 💌

Ionis reached an agreement for the future of the ION283 asset with Elpida Therapeutics. Terry Pirovolakis, CEO of Elpida Therapeutics, asked us to share this letter with the Lafora community to introduce their company and their plans for ION283.

Read letter:https://chelseashope.org/wp-content/uploads/2026/08/Letter-To-Lafora-Community-from-Terry-Pirovolakis.pdf

Chelsea’s Hope is committed to advocating for the Lafora community and helping accelerate the development of this potential treatment. Please direct any questions about ION283, Elpida Therapeutics, or the Safety Study to [email protected], and we will get back to you.

08/01/2026

August already?! For those enjoying the last month of summer before school begins, please keep the Symposium registration deadline (August 31st) in mind.

We'll have four events this month, too:
🗓️ Monday, August 3rd at 4:30 PM EDT is our next Family Support Group
🗓️ We'll host the second Lafora Therapy Q&A on Tuesday, August 11th at 1:30 PM EDT.
🗓️ The Board of Directors will meet later that day, at 9 PM EDT.
🗓️ The Family Support Committee will meet at 4 PM EDT on Monday, August 17th.

You can always check our events webpage to see what's coming up: https://chelseashope.org/events/

07/31/2026

And a caption you can read. Feel all five senses at the 2026 Lafora Symposium!

There is ONE MONTH left to register to attend in person. We would love to see you in Dallas!

🔗 Register today: https://givebutter.com/2026-lafora-disease-science-symposium

📸 photos from past events!