Finding Hope for FRRS1L strives to share information and resources with the public, medical professionals, and researchers to increase the awareness and understanding of FRRS1L.
PRESS RELEASES
Nov. 10, 2025- Finding Hope for FRRS1L Announces Partnership with Northern Bio for all FRRS1L Gene Therapy Toxicology Testing
Check out our latest updates on our Instagram page: @Hope4FRRS1L
FRRS1L in the News
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Daily Mail
Girl, 8, hit by rare genetic condition that has left her trapped in her body and only able to communicate with her eyes... but big pharma says it's too expensive to develop drug to help her
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Denver Post:
A Fort Collins family is trying to raise millions to test gene therapy that could help kids trapped in bodies they can’t move
Producing a treatment for 8-year-old Everly Green’s ultra-rare genetic condition isn’t profitable for drugmakers
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Thanks for Doing That Podcast: FRRS1L
In this special release, Heather talks with Chrissy Green about the reality for kids living with FRRS1L . Chrissy dives into the biology and science in the episode; but, basically the FRRS1L disorder causes disruption to messages in the brain and affects life holistically for these children and their families.
Finding Hope for FRRS1L is a parent initiated non profit that is seeking to foster community, create awareness, and find a cure. They have had ground breaking results in trial studies and are moving forward to get the treatment to the children.
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Observer Today - Dunkirk family seeks help for rare genetic disorder
A feature story on Zania and Alec, two FRRS1L kids that are brother and sister, and the hope to get a cure if the funds can be raised to pay for it.
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Oregonian - Saving Providence
A feature story on saving Providence who has a life debilitating genetic disorder called FRRS1L.
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North Forty News- Colorado
Fort Collins Family Raising $400,000 to Develop Treatment for Genetic Disorder.
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Despierta America, Univision USA
Media coverage about the story of Arturo's journey with FRRS1L and the hope for a cure, along with commentary from Dr Xilma Ortiz-Gonzalez from the Children’s Hospital of Philadelphia about the founder mutation effect in children of Puerto Rican heritage.
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El Nuevo Dia, Puerto Rico
Media coverage about the story of Arturo's journey with FRRS1L and the hope for a cure, along with commentary from Dr Xilma Ortiz-Gonzalez from the Children’s Hospital of Philadelphia about the founder mutation effect in children of Puerto Rican heritage.
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WAPA TV, Puerto Rico
Media coverage about the story of Arturo's journey with FRRS1L and the hope for a cure, along with commentary from Dr Xilma Ortiz-Gonzalez from the Children’s Hospital of Philadelphia about the founder mutation effect in children of Puerto Rican heritage.
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