Questions about gene therapy and Lafora Disease? Access the easy-to-read guide Gene Therapy 101 today.
If you want to read more about gene therapy, this is a good patient-friendly website.
If you have more questions about gene therapy and Lafora Disease, please feel free to contact our Science Director, Dr. Kit Donohue, at katherine@chelseashope.org.
Access the PDF in Italian, too: L’ABC della terapia genica.
Please join our new Science Director, Dr. Kit Donohue, for a community meet-and-greet. As Kit steps into her new role, she would like to hear from you—the patient community!
Kit has been fortunate to study in Dr. Matthew Gentry’s lab for the past five years, where she met and collaborated with many of the scientists seeking treatment for Lafora Disease. The progress that has already been made is a testament to what can happen when scientists work closely with the patient community.
Kit is excited to contribute to deepening that collaboration as we move closer to finding a cure for Lafora Disease. We hope you will join us and share your needs, questions, concerns, and hopes for the future of our community.
When: June 29, 2022 06:00 PM in Eastern Time US and Canada. Registration before June 29, 2022 is required.
If you are unable to attend or would like to submit a question/thought ahead of time or privately, please email katherine@chelseashope.org.
More information on new biotech company Vibe Bio and founder Alok Tayi helping Chelsea’s Hope and patients with rare disease by using crypto to support the development of treatments.
Today, I’m thrilled to share that our community is growing as our partnership with Vibe Bio officially launches to form New Hope Therapeutics – our joint company dedicated to pursuing a treatment for Lafora disease.
I first learned about Vibe Bio and its cofounder Alok Tayi through a mutual contact, and after hearing about Vibe Bio’s vision to build a new way to fund cures to rare diseases like ours, I felt hope. I have been blown away by how involved Vibe Bio wants to be in helping us to pursue a treatment for Lafora.
Vibe Bio’s mission is to find a cure for every community. They partner with patient advocacy organizations to fund treatments for rare diseases overlooked by the current drug development process. They know that the biggest obstacle to treating patients with rare diseases isn’t finding cures — it’s funding them. And they’re tackling that issue by raising new capital through cryptocurrency token sales that patient communities can put towards the treatments you need.
They’re also building a community of patients (like ours), scientists, and partners to ensure that no patient community is left to pursue a treatment alone. They connect our members to key resources and each other so that you have the support and expertise you need to navigate the drug development process.
Alongside Vibe Bio, we are launching New Hope Therapeutics to give patients with Lafora disease and other rare conditions access to the funding and community support they need to develop cures and ownership over the results.
Vibe Bio would appreciate any support you can offer to amplify news of our launch on social media. You can find sample posts for LinkedIn, Twitter and Facebook here.
With gratitude,
Lena Ismail
Executive Director
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 non-profit organization. EIN: 27-1008382
Chelsea’s Hope, Post Office Box 348626, Sacramento, CA 95834
