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.

Donate Today

We exist for a Cure

All donation dollars go directly to funding the work to create the gene therapy treatment. We have no paid staff and have minimal operating expenses. We focus on fundraising for specific line items in the process of creating the final treatment for FRRS1L children.

We are not trying to be a big non-profit, with a big staff, and a big budget, to just exist forever. We want to create a cure, and get it to the kids. That is all.

Every dollar is assigned to the exact expense in the steps to produce and treat FRRS1L children with a gene therapy treatment.

Check out our new giving platform that makes donating easier. You can pick credit card, check, or offline giving.

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.

Learn more about FRRS1L

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.

REGISTER TODAY

Finding Hope for FRRS1L Mission

  • FIND a Community

    Create a community of Hope for FRRS1L gene disorder children and families to connect, communicate, collaborate, and support one another.

  • 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.

  • FRRS1L awareness

    Share information and resources with the public, medical professionals, and researchers to increase the awareness and understanding of FRRS1L.

Learn About Us

Our Community

  • Emilio

  • McKayla

  • Arturo

See Our Community

Goals

Current Goals that fall under our mission: 

 

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 research and development for treatment of FRRS1L genetic disorder. Help us reach our goal to fully fund treatment development.

Donate Today
 

Medical Professionals

Reaching out to doctors, medical professionals, and organizations to increase awareness of FRRS1L.

Contact us.

We would love to hear from you. For feedback, comments, or questions, please use the contact us form.


 

If you are the family of a child with FRRS1L, and are not yet connected with our cause, please fill out the Register form to receive updates on fundraising and the development of treatment.

General FRRS1L Facebook: Finding Hope for FRRS1L 

Family Support Group on Facebook link: FRRS1L Support Group

Instagram: @Hope4FRRS1L