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
Vibe Bio Launches To Transform Drug Development For Patients With Rare Diseases
/by Niki MarkouMore 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.
Vibe Bio and New Hope Therapeutics launch today
/by Niki MarkouToday, 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
ONCE UPON A GENE PODCAST- EPISODE 138 – Chelsea’s Hope Lafora Children Research Fund with Niki Markou and Jenifer Merriam
/by Niki MarkouJenifer Merriam and Niki Markou are courageous moms, serving on our Board of Directors. They share what it’s like to cope with a child’s suffering with a rare disease with no cure. These moms are working together to fund research for medical therapies and were recently awarded a Chan Zuckerberg Initiative Rare As One grant, which will help in their race against time for their children.
EPISODE HIGHLIGHTS
Niki, can you introduce yourself?
I live in Sydney, Australia and have an 18 year old daughter who has Lafora disease. She was healthy until she was 14, when she fell down and had a seizure.
Jenifer, can you introduce yourself?
My daughter was a healthy teen and around age 15, she started experiencing myoclonic jerking in her hands and arms. Eventually she began having frequent seizures, cognitive decline and was diagnosed with Lafora disease.
What are your current barriers for gaining access to treatments for Lafora Disease?
In the labs, they’ve found therapies, but we don’t have any human clinical trials, which is what we’re raising awareness around. With therapies available, we want to get our children to clinical trials to see if the therapies work. We’ve had planned clinical trials before that haven’t successfully happened because there aren’t enough Lafora patients for a return on investment.
What are you doing to move forward in finding potential treatments for Lafora?
We talk to a lot of organizations for similar diseases, talk to professors and biochemists around the world, meet and brainstorm, seek alternative pathways and drugs that could be used. Every minute we have we are taking this on, trying to find a solution.
You can also search on your podcast app, Once Upon A Gene and look for episode 138
Announcement: Ionis Pharmaceuticals
/by Niki MarkouDear Lafora Disease Community,
We have received a letter from Ionis Pharmaceuticals regarding the proposed clinical trials 2022.
This year has presented us with new challenges yet again.
Continuing to Hope…
We will never stop fighting for a cure. Our team is working tirelessly to uncover new ways to overcome our challenges. We will continue to update all of you as we receive more information.
To read the statement