ONE DOSE
ONE DOSE
In the darkest places, sometimes just a small injection of hope can create a ripple effect that changes the world…
One dose to change the world
FINDING HOPE
FRRS1L gene is a protein coding gene contained in all cells of the brain. It helps build key components of the ampa receptor that get produced to sit outside the cell and send messages between cells. FRRS1L gene disorder results from a mutation and resulting loss of function of the FRRS1L gene. FRRS1L disorder causes the messages in the brain to not get through from one cell to another. These messages affect all areas of function and life for the child. The resulting disorder produces epilepsy, progressive dyskinesis (abnormal movements), developmental delay, diffuse hypotonia, and global loss of function. Current research shows children from birth to two years old having developmental delays, but still gaining abilities, and then at age two begin having seizures that cause regression, and quick loss of function and/or abilities. Frizzle children are trapped in a body they can’t move, however still retain high cognitive function, understanding, communication, and awareness.
Enter Finding Hope for FRRS1L. They focus on fundraising for specific line items in the process of creating the final treatment for FRRS1L children around the world. Their goals simple: 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. No inflated overheads, no bloated budgets, just laser-like precision to find a cure as effectively and quickly as possible.
Finding Hope for FRRS1L is more than a group of parents with endless levels of love and determination in their hearts, it’s a movement. A movement to push people to find hope in their daily lives in whatever ways we can.
Finding Hope for FRRS1L had been working the last 2 years with a team of top gene therapists at the University of Texas Southwestern (UTSW). The team had the challenge of breeding mice with FRRS1L disease, and then developing a gene replacement treatment. FRRS1L bred mice are weak, fragile, and struggle to move and function, just like our FRRS1L children. However, our research proves that when treated with gene replacement therapy the mice come back to function. We want that for all current and future FRRS1L children! We can do it with your help! We can change the world with a cure!
After 2 years of work in the lab, results are in from FRRS1L mouse models and have proved that gene replacement treatment worked to bring function back to FRRS1L diseased mice! This is life changing news, treatment is possible for FRRS1L children, but it requires more action and funding.
But the work is only just beginning. Now Finding Hope for FRRS1L has to raise money to achieve their goal of starting treatments for Frizzle patients by Sept. 2026. A lot has to happen in order to make that happen, which is why this documentary initiative was started. We have 3 main goals with this documentary- help spread the word and tell the story of the race to the cure for FRRS1L, help raise money directly for Finding Hope for FRRS1L, and eventually sell our documentary to a distributor and donate the proceeds to Finding Hope for FRRS1L.
Help us tell this story by supporting the documentary on our Kickstarter page.
WAYS TO GET INVOLVED
Help fund the documentary by investing in one or more of our tiers over on our Kickstarter page. There are a TON of really cool perks that you won’t want to miss out on. Click or tap on the image above to check out what we have to offer on the Kickstarter!
Visit Finding Hope for FRRS1L’s page to learn more about their incredible organization and give directly to their cause. We don’t want to get in the way of your generosity, so please feel free to give directly to them if that is where you feel like your donation is best suited.
We need EVERYONE to help us get the word out about this documentary and help tell the story of Finding Hope for FRRS1L. Click or tap on the image above to follow us on our socials and please share our content so we can get this information in front of as many people as possible!
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COMING SOON
COMING SOON
Another way to help support us is by buying our merch. All proceeds will go straight to helping fund the documentary, and you will be helping to spread the word at the same time!