Give the Gift of Hope this Holiday Season!
Watch our NEW Video: A Story of Frizzle
Help us share the powerful story of HOPE that Frizzle treatment will change the world and restore the lives of Frizzle children through gene replacement therapy. It will bring their brains and bodies back to function. We have a goal to treat by Sept. 2026, and a plan with our partners to do it. But we need to raise $5 million to fund it. Help us get this treatment to the finish line by donating today!
FUNDRAISING UPDATE
Goal 1: COMPLETED
GOAL 2: COMPLETED
GOAL 3: COMPLETED
Fundraising Goal: $1 million by Dec. 31, 2024
Toxicology Testing: This step in treatment development is required by the US FDA. We can now begin this process with the funds raised.
Goal 4: (Current Stage)
Fundraising Goal: $3 million to fund the manufacturing of the drug/treatment
Goal 5: (Spring 2026)
$2 million for Clinical Trials to treat Frizzle children
Note: Our projected timeline for fundraising and treatment development is completely dependent on funds being raised to pay for each stage. We hope to raise the funds needed as soon as possible to keep the treatment development process moving; however, it is subject to change.
Treatment by NEXT YEAR is possible with your support!
Our race to lifesaving treatment has begun. We have a goal to begin treating Frizzle patients by Sept. 2026, but it will only happen with your support! Help us fund the cure! Donate today to help fund the manufacturing of the drug that will be a one time injection for Frizzle patients!
All donations are tax deductible, and go directly to fund the development of FRRS1L gene therapy treatment. Your gift will help ALL children with FRRS1L. That is older children who have lost hope, younger children who haven’t yet regressed, and unborn children who will inherit this disorder. This research also moves forward the science that may result in cures for other genetic disorders.
Ordering Holiday Cards Soon?
Check out Minted and use code: FUNDRAISEHOPEFRRS1L to get 20% off!
When you use this code on minted.com you get 20% off your oder and 10% of sales will be donated to Finding Hope for FRRS1L.
Data is in and it shows treatment is possible for FRRS1L children,
but it won’t happen without your help!
After 2 years of work, results are in from FRRS1L mouse models and gene replacement treatment worked to bring function back to FRRS1L diseased mice! This is life changing news, that requires more action and funding. Would you join us in making treatment a reality for sick FRRS1L children?
Donate today to help us fund treatment development for FRRS1L children!
HELP FUND A CURE
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Click to Donate
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HELP FUND A CURE 〰️ Click to Donate 〰️
Within weeks children lose their ability to move, speak, eat, and control their body.
We see these children looking at a toy they once held. We know they want to play with it, but they physically can’t. They are trapped.
Learn about their Hope for a Cure and how you can help!
REGISTER your FRRS1L Child
By registering your child/children with Finding Hope for FRRS1L, it provides valuable information that will help us better understand and track the global map of the FRRS1L community; it will inform researchers conducting a natural history study of FRRS1L; and it also allows us to keep you informed through email updates and news on the progress towards developing gene replacement therapy. Registering your child is completely optional.
It wasn't always like this for children with FRRS1L gene disorder.
Before the disorder took full effect, parents knew and saw their children to be busy toddlers. FRRS1L is a critical brain encoding gene that affects all cells in the brain. Children with this gene disorder develop, albeit delayed, until age two when they begin having seizural activity that causes regression and loss of function.
Finding Hope for FRRS1L Mission
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FIND a Community
Create a community of Hope for FRRS1L gene disorder children and families to connect, communicate, collaborate, and support one another.
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HOPE for a Cure
Serve to fund research and development of gene replacement therapy treatment for FRRS1L genetic disease.
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FRRS1L awareness
Share information and resources with the public, medical professionals, and researchers to increase the awareness and understanding of FRRS1L.
Be a Part of Changing the World
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GIVE
Donate today to help fund a cure. All donations are tax deductible.
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SHARE
Share our emails, posts, links, and information to get the word out that we need help funding life changing treatment.
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FRRS1L AMBASSADOR
Join us in this life changing cause by becoming an official FRRS1L Ambassador.
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CORPORATE CHAMPION
Join us as a Corporate Champion and help change the world. We are looking for innovative and visionary corporate donors to be a part of our life saving, world changing, and ground breaking cause. Join us as an official CORPORATE CHAMPION!
Our Community
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Emilio
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McKayla
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Arturo
Goals
Families
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As we fundraise and word gets out, there are more families contacting us that have children with FRRS1L genetic disorder. Our goal is to get them connected with providing: key information, a link to join the FRRS1L Support group on Facebook, access to current research efforts, and the ability to join our efforts in funding a cure.
Fundraising
Raise money to fund the development of gene replacement therapy treatment for FRRS1L genetic disorder children. Help us fund a cure!
Medical Professionals
Reaching out to doctors, medical professionals, and organizations to increase awareness of FRRS1L.