Chelsea's Hope Lafora Children Research Fund

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Lexington, KY
Chelsea's Hope Lafora Children Research Fund

Our mission is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.

We create awareness, connect families, fund research, and maintain hope for a cure, in memory of our namesake, Chelsea Ge**er. Chelsea's Hope is dedicated to raising awareness, connecting families, supporting research for a cure, and maintaining HOPE for children suffering from Lafora disease.

06/17/2026

reminder that we love to celebrate our Lafora warriors!

Our goal with this weekly feature is to bring our community together and help raise awareness about Lafora. Some examples of what you can share:
🗺️ Where you're from
📖 As much of your story as you're comfortable telling
📹 Photos or videos!

🔗 Fill out the form via our link-in-bio to be featured.

📸 This photo was from Khari's high school graduation several years ago.

06/16/2026

📢 Registration for the 2026 Lafora Symposium is now open!

🗓 When? October 19-21, 2026.

📍 Where? Dallas, Texas. Or, attend remotely!

The official deadline to register for in-person attendance is September 1st. Space is limited, so we encourage early registration! We will make this a hybrid event, so you can register to attend virtually if that’s a better option for you.

Don’t miss this chance to share ideas, learn research updates, and collaborate to create a brighter future for Lafora patients!

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

➡️ Do you know someone who might be interested? We’d love it if you could help us spread the word by sharing this post.

06/14/2026

So far, we've raised $5,105 through the Lafora Walk & Roll. 🎉

We've passed our first goal thanks to 60+ participants and the generosity of supporters like you.

If you're looking for a sign to join our virtual 5K, this is it! It will run through the rest of June. Participants can create their own fundraisers to spread awareness and fundraise to advance potential Lafora treatments.

Tap that link in our bio to join or donate. We appreciate your support, today and always!

06/09/2026

📢 Reminder, we've got a Courage in Care session TOMORROW, June 10th!

We're so excited for Brad Thompson, a Licensed Professional Counselor, to join us to discuss Caregiver Health.

Have you ever wondered, in a reality that doesn’t allow for spa days or even trips to get your nails done or walks around the block, how do you build and maintain resilience for this journey? What if we could find growth and resilience not before or after giving care, but in the midst of it?

We’re going to talk about how we can maintain our own personal health while caregiving and around the edges of it. It is possible, we just have to develop the eyes to see it.

➡️ Register here for the Zoom link and recording: https://forms.gle/UKjp9WYAYuxTrjXj7

📍 Wednesday, June 10, 2026
🇺🇸 3:30 PM ET / 2:30 PM CT / 1:30 PM MT / 12:30 PM PT
🇬🇧 8:30 PM BST
🇪🇺 9:30 PM CEST / 10:30 PM EEST
🇦🇺 5:30 AM AEST, Thursday June 11th

06/01/2026

June is the month of our first Lafora Walk & Roll 5K! 💪 Together, we can improve patients' quality of life and support potential Lafora treatments, one step at a time.

🗓️ Join us for events that raise awareness, build community, and advance our mission. Check our events webpage for more details: https://chelseashope.org/events/

05/30/2026

🚨 Don’t miss your chance to participate in the Lafora Walk & Roll 5K! Register by June 1st: https://givebutter.com/lafora-walk-roll-5k-2026

While this virtual event is flexible and customizable, event t-shirts are limited! But if you get a ticket before June 1st, you can still get a Lafora Walk & Roll 5K shirt shipped to you.

We are also hosting a Zoom kickoff meeting tomorrow at 3 PM EDT for all registrants. Even if you haven’t joined the 5K, you are welcome. If you’ve got questions, tomorrow is a great chance to get them answered and meet other participants. DM for the link 🔗

🤝 Finally, if you can’t join the 5K, can you please help us by sharing about it? All proceeds support the advancement of potential treatments for Lafora.

&Roll

05/28/2026

Hope to see you soon at our FIRST Courage in Care session!

Please register to get the Zoom link. If you can't make it, we'll share the training recording with caregivers afterward.

➡️ Register here: https://forms.gle/L6TbaT9qpAhXKruWA

05/26/2026

📢 Our May 2026 newsletter is out now!

This month, you can read about Symposium registration, learn how to join the June 5K, access new support resources for caregivers, and more.

Feel free to share the newsletter or any of its content with others who may be interested. Check your email or read here: https://mailchi.mp/chelseashope/newsletter-may-2026 🔗

05/19/2026

📢 Announcing Courage in Care, a new series to support Lafora caregivers! Our first training later this month will feature special guest Kaitlin Baum, RN, on engaged care.

We hope you can join us at 1 PM EDT on Thursday, May 28th.

👉 Check the registration for your local time and sign up here: https://us06web.zoom.us/meeting/register/LKce_xDaQZe9nnuaLnaLFQ #/registration

Kaitlin is a Registered Nurse with experience in cardiology, mental health, and home health nursing. She has nearly two years of dedicated experience caring for a patient with Lafora disease. Her holistic approach is deeply patient-centered, combining clinical expertise with empathy to encourage the highest quality of living. 💜

We plan to record this meeting and share it as a free resource for families who can't make it.

Questions? Please reach out beforehand!

05/15/2026

Join us for the Lafora Walk & Roll: A Virtual June 5K!

☀️ Let’s shine a light on Lafora this summer.

Throughout June, participants can walk, roll, run, swim, or complete any movement activity totaling 5km or 3.1mi. You can join from anywhere in the world, at any time, to raise awareness of Lafora disease.

Participants will get:
✅ Support to join/create a team
✅ Ability to create a personal fundraising page/link
✅ Event t-shirt***
✅ Rock & Roll playlist to motivate you while you complete your 5K
…and we’ll have some prizes throughout June!

All proceeds will help advance potential treatments for Lafora disease. Register here: https://givebutter.com/lafora-walk-roll-5k-2026

***Register before May 18th to get a shirt by June. Register by June 1st to get an event t-shirt.

Together, we .

Address

Lexington, KY

Website

https://chelseashope.org/

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