WE NEED HEROS and CHAMPIONS

Be a part of CHANGING LIVES and CHANGING THE WORLD!!

Thank you for learning more about our struggling Frizzle genetic disease patients and their hope for treatment. We as an organization want to inform and equip the public in hopes that some will join us as heros and champions to help us get this treatment fully funded and to pateints by Septmeber of this year!

Key Information for Donors

Organizational Information

  • Finding Hope for Frizzle (FRRS1L) is a 501c3 nonprofit registered in the state of Colorado.

  • Started by Parents of Frizzle Patients in 2021

  • The organization has no paid staff. All positions are filled by volunteers.

  • All donated funds go directly to the treatment development process and costs.

  • We are a parent-led organization, that has control of our treatment program

  • We are the sponsors of our Pre-IND with the US FDA

 Donations go Directly to Treatment Development

  • 97% of funds received to date have gone directly to pay for the treatment development process.

  • 1.5% went to administrative costs

  • 1.5% went to the donation platform processing fee

  • 2026 fundraising is focused on funding the manufacturing of the literal drug to be given to patients in a clinical trial; and the clinical trial.

  • The remaining funds needed are a total of: $4 million.

Multiple Ways to Donate

FUNDRAISING UPDATE

Current Funding Need: $4 million

  • Goal 1: COMPLETED

  • GOAL 2: COMPLETED

  • GOAL 3: COMPLETED

  • Goal 4:

    • Fundraising Goal: $3 million to fund the manufacturing of the drug/treatment

    • Current Status of Goal: $1 million raised of $3 million goal

  • Goal 5:

    • $2 million for Clinical Trials to treat Frizzle children

      Note: Our projected timeline for fundraising and treatment development is completely dependent on funds being raised to pay for each stage. We hope to raise the funds needed as soon as possible to keep the treatment development process moving; however, it is subject to change.

Every day is a fight for these kids, but you can help them.

Help us fund treatment!

A young boy lying in a hospital bed, connected to medical monitors and equipment, with a healthcare professional standing nearby in a hospital room.
Close-up of a young child with an oxygen tube on their nose, wearing a hospital cap and colorful hospital gown, lying in a hospital bed.
Young boy sleeping in bed with a nasal oxygen mask attached to his face.
Young woman in a wheelchair, wearing a red sleeveless top and denim shorts, holding a remote control near her face with her mouth open, sitting indoors with sunlight coming through a door.
A young girl with dark hair wearing glasses is resting in a hospital bed. She has a breathing tube and is holding a Minnie Mouse plush toy. The background has colorful paper hearts taped to the wall.
A young girl with curly hair smiling while sitting in a wheelchair in a living room.
A young girl lying in a hospital bed with medical equipment attached, wearing a colorful hospital gown, with her eyes closed and an IV in her arm, surrounded by hospital supplies and monitors.
Young girl lying in a hospital bed with a medical IV attached, smiling and wearing a pink sleeveless shirt with colorful flower and unicorn prints, with a pink hair bow decorated with butterfly and star shapes, resting her head on a pink and blue pil
A young girl with dark curly hair sitting in a walker with a tray table. She is wearing a black and gray sensory vest and has a colorful toy on the tray. The background shows a living room with a brown sofa, a floor lamp, and a closed door. The word
Young man with disability sitting in a wheelchair with a head support cushion, surrounded by colorful toys and a mobility aid, in a living room with a brown couch and window blinds.
A young child lying in a hospital bed, smiling, with a bandaged head and wearing glasses, dressed in a colorful cartoon-patterned hospital gown.
Young girl in a pink and black wheelchair being examined by a medical professional. The girl has glasses and looks slightly unwell. The room has various medical and craft supplies.
A young girl in a wheelchair covered with a pink Mickey Mouse blanket, wearing a hospital gown, in a hospital room.
A young boy with short dark hair in a wheelchair indoors, looking at the camera with a sad expression, wearing a colorful shirt and gray pants.
Young boy in a wheelchair at a therapy or medical facility, wearing a gray Nike shirt and a specialized blue harness or vest for support, with a nasal oxygen tube, in a room with colorful tiles and exercise equipment in the background.
A young girl sitting in a wheelchair with a pink blanket behind her head, wearing a white t-shirt and light-colored pants, with her eyes half-closed and lips pursed.
A woman with glasses leaning over a young boy in a hospital bed, who is connected to medical devices and wearing a neck brace, with colorful cartoon patterns on the bedding.
A young girl with a nasal oxygen tube, lying in a hospital bed, wearing a white knit hat and cozy pajamas with a unicorn pattern.
A young girl with a nasal oxygen tube smiling, wearing a pink dress, white shirt, and beige sandals, sitting on a pink and white patterned blanket.
Infant in a hospital bed connected to medical devices, with a blanket covered in pink and purple circles, and a sign indicating the bed's position.