Join us for Giving Tuesday, Dec. 3, 2024, a special online fundraising event. As you consider your yearend giving, we hope you will consider donating to Finding Hope for FRRS1L. Donations given will be used to fund the next stage in our process to develop lifesaving treatment for FRRS1L children around the world. Our current goal is to fund the toxicology test that is required by the US FDA. We hope to raise $1.1 million by Dec. 31, 2024 so that we can begin the toxicology testing in January 2025.
Early giving begins Nov. 1 and goes until Dec. 31, 2024.
Giving Tuesday
HELP FUND A CURE
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Click to Donate
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HELP FUND A CURE 〰️ Click to Donate 〰️
FUNDRAISING UPDATE
Goal 1: COMPLETED
GOAL 2: COMPLETED
GOAL 3: (Current Goal)
$1 million by Dec. 31, 2024. This is to fund the required US FDA Toxocology testing
Goal 4: (Spring 2025 Goal)
$3 million to manufacture the drug/treatment
Goal 5: (Fall/Winter 2025)
$2 million for Clinical Trials to treat Frizzle children
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!
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!
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!
Donate to Help Fund a Cure for FRRS1L
Help provide life saving treatment to children with FRRS1L. All donations are tax deductible, and go directly to fund the research and 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.
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.
Within months, or even weeks, children lose their ability to move, speak, feed orally, and control their head and their body.
Witnessing a child lose abilities and independence is an indescribable pain. Currently, there are no medicines to control it, to slow it down, or to heal it. Parents are trapped in a hopeless inability to help their children, and there has been no viable prospect of finding treatment or a cure.
Until NOW.
Learn more about our Hope for a Cure.
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.
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 to find a cure for FRRS1L gene disorder and other treatments that would improve the quality of life of children with FRRS1L.
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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.
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.