Chelsea's Hope Lafora Children Research Fund

10/08/2026

Every dollar you give today is DOUBLED thanks to the matching gift.

Would you consider supporting our mission today? Here's why we urgently need your help, from parents fundraising:

"Losing my beautiful Angelina to Lafora disease at just 21 left a hole in our lives that nothing can fill. As I’ve mentioned many times, Lafora is a rare, devastating form of epilepsy and childhood dementia that takes young people far too soon. Until there is a cure, I will be a lifetime advocate for Ange...Every donation supports Chelsea’s Hope Lafora Children Research Fund toward a cure, so other kids don't face what Ange did...Thank you from the bottom of my heart.�Love, Niki ###"

"Children with Lafora disease urgently need a treatment, and too many have already lost their lives while waiting for that day to come. For families facing this devastating disease, time is not on our side. Several potential treatments are within reach, but the funding needed to advance them into clinical trials for this ultra-rare disease remains the critical barrier. With the resources to move these treatments forward, we have an opportunity to change the course of Lafora disease and give children and families the hope they desperately need." - Jenifer

"Nous organisons cette collecte afin de soutenir une famille qui traverse une période difficile. Chaque contribution, petite ou grande, peut faire une réelle différence. Merci du fond du cœur pour votre générosité et votre soutien. ❤️🙏" - Jad

Donate here: https://givebutter.com/lafora-body-disease-day-2026/

We NEED to reach effective treatments, accessible to all children affected by Lafora disease. As we help accelerate treatment development, we also want to improve the lives of those affected by Lafora. Your support fuels our mission. Even donating the amount of a coffee helps.☕

10/05/2026

In loving memory of Aayan

Today we remember Aayan, who passed away on October 2nd from Lafora disease. He was 19 years old.

Four years ago, Aayan was diagnosed with Lafora disease, and his family watched him face battles that would have broken many of us. Day after day, he fought. He endured more than anyone should have to, and somehow he still smiled.

His wit, cheekiness, charm, and humour made his family laugh when they wanted to cry. His heart remained pure, kind, funny, and brave.

The Chelsea's Hope community sends our deepest sympathies to his loved ones. Please join us in sending condolences.

💜

10/05/2026

📢 October Family Support Group Reminder 📢

🗓 When? Monday, October 5th at 4:30PM EDT (today!!!)
⁠
🔗 Where? Zoom! Register here if you haven't attended a group before: https://forms.gle/kJBgN21uczkM5kXY7

We hope you will come join the Lafora Support Committee to connect, share, and support each other! Monthly meetings will be held for the rest of the year; you only have to register once!
⁠⁠
Registering will allow you to find your local time. All Lafora family aged 16+ are welcome to join! TransPerfect provides AI captions in different languages you can select when you register!

🎉 We can't wait to see you there!

10/02/2026

Happy October!

We started the month with Lafora Body Disease Day, our annual awareness campaign on Chelsea's Heavenly Birthday, October 1st. Then, we are ending it with our annual Lafora Disease Science Symposium October 19th-21st. There are many awareness efforts and activities you can get involved in; just DM for more details!

Highlighting more dates:
🤝 Our next Family Support Group occurs on Oct. 5
☕ Coffee for Chelsea's Hope continues through Oct. 8. We have a 2x match on donations, this week only!

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

10/01/2026

UNITED AGAINST LAFORA

🌍🌎🌏

We are united in memory of the children we have lost, in honor of the children we are fighting for, to reach treatments for Lafora disease. Join us!

10/01/2026

This , share how you and join global awareness efforts. 🗺

Every story, every share, and every conversation matters. You can download these awareness graphics here: https://drive.google.com/drive/folders/1pwdwd0TcV6Xkb-7pT-4yUOansQT9_-dc?usp=sharing

Chelsea's Hope Lafora Children Research Fund also has a donation match you can help us unlock on the campaign TODAY. Your support helps fund work to accelerate potential treatments for Lafora disease. 💜

09/30/2026

Need some inspiration to raise awareness on ? Take a look at our toolkit 👇

More awareness is essential for better support, funding, and quicker access to potential treatments. Please join in this October 1st by sharing about Lafora, your family's story, or why you are recognizing the Awareness Day.

We'll have a 2x donation match on October 1st, too, so it's a great time to encourage your friends and family to donate. 💜

Access the social media toolkit here: https://docs.google.com/document/d/e/2PACX-1vQ3dJeXV2ukTmt64dtuY9IiqdpqHLO8kKqAKy8amFSy-5FCcnn8CgImutatZQsuCE_KUD_zxxZJgMSL/pub

09/29/2026

Happy 20th birthday to Ty! 🎉

What a year it has been. May today (and always) be filled with love and hope. Let’s join together to celebrate him today! 🎊

09/29/2026

Raising awareness ahead of ! Follow along and help spread the word today.

Welcome to with Chelsea's Hope Lafora Children Research Fund. Our goal today is to spread awareness before on October 1st.

Lafora is a neurodegenerative glycogen storage disorder that causes epilepsy and childhood dementia. It's fatal, a devastating diagnosis you never expect.

Founded and led by parents, Chelsea's Hope is dedicated to improving the lives of those affected by Lafora and helping accelerate the development of treatments.

A huge thanks to Rare Revolution Magazine for this opportunity! We hope you'll follow along and join in as we raise awareness. Together, we can create a future where Lafora is not a death sentence, but treatable.

➡️ Learn more: https://chelseashope.org

09/27/2026

☕️ Coffee Lover Sweepstakes Announcement ☕️

We’re excited to be giving away a $25 Starbucks gift card to one lucky coffee-lover participating in the fundraiser.

As you donate to this fundraiser, you have the opportunity to join the sweepstakes. For full details, see terms and conditions at the bottom of the campaign page:

Coffee for Chelsea's Hope fundraiser and Lafora Body Disease Day 2026 awareness campaign.