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Tag Archive for: dr. kit donohue

Text says 'Lafora Disease Therapeutic Overview presented by Dr. Kit Donohue'

Lafora Disease Therapeutic Overview

September 8, 2023/by Christine Kelly

We invite you to watch a video and read a page about the Lafora Disease Therapeutic Overview as of August 2023.

Are you wondering if there are future therapy options for Lafora Disease? Also, what treatments are in progress?

At last week’s event, Ask the Experts: A Q&A for Lafora Families, Chelsea’s Hope Science Director, Dr. Kit Donohue, shared an overview of treatment options in the pipeline. We are happy to share a short recording from the Q&A, as well as a PDF page with information from the presentation slideshow.

If you registered for the event, we’ve already sent you the full recording and handout. Make sure to check your email!

Watch Lafora Disease Therapeutic Overview on YouTube

We hope the Q&A was informative and that participants could get their questions answered. Our team will work on creating handouts on Lafora Disease stages and on the importance of testing siblings of Lafora Disease patients. Please let us know if there are other resources we can provide to help you navigate living with Lafora.

Finally, Chelsea’s Hope is grateful for any volunteer who can translate materials from English to other languages. We encourage you to fill out the volunteer interest form if you can assist us.

Access the Lafora Disease Therapeutic Overview video captions in English HERE.

Access the transcript in Italian HERE.

Please email Dr. Donohue if you have any follow-up questions from the Q&A.

Download Therapeutic Overview PDF
https://chelseashope.org/wp-content/uploads/2023/09/Lafora-Disease-Therapeutic-Overview-YouTube-Cover.png 720 1280 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2023-09-08 10:08:222024-02-19 10:45:32Lafora Disease Therapeutic Overview

READ ARTICLE: The democratization of science could speed up healthcare research

January 23, 2023/by Christine Kelly

“A direct connection between scientists and the community helps ensure the science is being as efficient as possible and addressing the direct needs of the patient community.”

This piece features our Science Director, Dr. Kit Donohue (quoted above)! It explores recent challenges in rare disease research, and how decentralized, autonomous organizations (DAOs) like Vibe Bio creates can help in our journey to finding Lafora disease treatments.


Read article

https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png 0 0 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2023-01-23 12:30:312023-08-30 14:32:52READ ARTICLE: The democratization of science could speed up healthcare research

About Chelsea’s Hope

Chelsea’s Hope began as a website in the fall of 2007 to share Chelsea Gerber’s story with family and friends. A 501(c)(3) organization since 2009, we have made an impact by raising awareness, connecting families worldwide, funding research, and maintaining hope.

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

View Chelsea’s Hope Newsletter Archive 

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Latest News

  • Press Release: UNITED AGAINST LAFORA, FAMILIES WORLDWIDE RAISE AWARENESS

  • New Resource: Lafora Anti-Seizure Medication Guidelines

  • Join in Lafora Body Disease Day 2026!

  • Lafora Therapy Q&A Resources

  • Student Ambassador Applications Open

  • Social Security Added Lafora to Compassionate Allowances List

  • Elpida Therapeutics’ Press Release

  • ION283 to be Developed by Elpida Therapeutics

  • Update on the ION283 Program from Telethon

  • Introducing the Lafora Clinical Network Registry

The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.

Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 nonprofit organization. EIN: 27-1008382

Location imageChelsea’s Hope c/o Dr. Donohue

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Lexington, KY 40504

info@chelseashope.org

Use ICD-10 code G40.C for Lafora.

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