A group of parents of FRRS1L children organized in July of 2021 to form “Finding Hope for FRRS1L”.
Currently the nonprofit is incorporated in the state of Colorado.
Finding Hope for FRRS1L nonprofit mission is:
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 the research and development of gene therapy replacement treatment, that has been proven in research to bring FRRS1L mouse back to function.
FRRS1L awareness
Share information and resources with the public, medical professionals, and researchers to increase the awareness and understanding of FRRS1L.
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. We want to develop a cure, and get it to FRRS1L children.
Every dollar is assigned to the exact expense in the steps to produce and treat FRRS1L children with a gene therapy treatment.
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OUR HISTORY
The story of “Finding Hope for FRRS1L” began with a FRRS1L support group on Facebook where parents connected with other families around the world with children diagnosed with FRRS1L gene disorder. They acted as their own research forum as parents asked and shared what was happening to their child, what medicines they were trying, and ultimately if anyone had found anything to help. Although it was encouraging for parents to not feel alone on this confusing road of regression, there was also disappointment and some hopelessness as no one had found anything that worked against this devastating disorder.
Then in July 2021, moms of FRRS1L kids decided to organize to help find a cure for their kids. They met with a gene therapist doctor, Dr. Minassian. It was this life changing call that lit a match of hope that turned into a fire! Dr. Minassian presented findings from a German research study, which showed mice with FRRS1L disorder that had gene replacement therapy not only regained function, but even showed cell regrowth. These were shocking and exciting results. The Frizzle moms had tears of joy and hope. This meant there was real hope that gene replacement therapy could work as a treatment to cure FRRS1L gene disorder. It meant children of all ages with the disorder had hope for cell regeneration and healing. Dr. Minassian conveyed to the parents that he not only wanted to work on developing treatment, but he wanted to do it as soon as the funds could be raised for it. To have a top gene therapist excited and hopeful about working on your child’s genetic disorder was shocking, exciting, and life changing.
Children with FRRS1L genetic disorders are always regressing, so there was no time to lose. The founding moms, spent the next 3 weeks organizing, building a fundraising page, and mobilizing other families in the Facebook support group to start fundraising the $400k required to fund the development of treatment for a cure. On the morning of August 22nd, the fundraising web page went live and parents started spreading the word with family and friends via email and social media. The initial goals were to raise the first $100k in 30 days, and the remaining amount by the end of 2021.
The response was amazing. Immediately a gift of $10,000 came in. Throughout the day many more gifts came in and the first $100k was raised in less than 30 hours! Before the end of the first week of fundraising the campaign was nearing 50% of the total $400k goal to fund the treatment project.
The ability to raise the support needed has come from all the FRRS1L families working together to share the stories of struggle for their child, but even more so from their hope for finding a cure. The pain and loss from watching a child suffer with FRRS1L disorders impacts broader networks of family and friends, so when news of hope for a cure was shared, the outpouring of love, support, and generosity was unbelievable. It has truly been a story of Finding Hope for FRRS1L, and this is just the beginning.