THIS YEAR IS THE YEAR

for a Frizzle Clinical Trial!

After five years of work we are almost to the finishline. We hope to open our first ever Frizzle Clinial Trial by this fall so we can start treating Everly and her fellow Frizzle friends - but it won’t happen without funding. Donate today!

Everly will be participating for the third year in a kids Adaptive Triathalon on Sept. 11th, 2026 to raise funds to help pay for an upcoming clinical trial for Frizzle (FRRS1L) disease! Every dollar donated goes directly to treating Frizzle kids!

Everly fights every day to stay as healthy as she can, because treatment is coming!

Will you help her get treatment? Donate today!

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Race to TREATMENT

Everly has a life debilitating genetic disorder called FRRS1L (pronounced Frizzle) that caused her to lose all her abilities at the age of two. She is cognitively present, sharp, and capable and demonstrates that by using an eye gaze communication device. Everly is trapped in a body she can’t control or move, preventing her from playing and engaging the world and people she loves. BUT, that would all change with treatment that would bring Everly’s brain and body back to function. Research shows it will work, we just need to fund the one time treatment. Everly is doing this kids adaptive triathlon to share her story of hope and to raise the final funding to start a clinical trial this fall. Help us get this treatment to the finishline! Donate today!

All donations are through Finding Hope for FRRS1L, the nonprofit started by Everly’s parents alongside one other Frizzle family. Finding Hope for FRRS1L is a 501c3 nonprofit registered in Colorado. All donations by US citizens are tax deductible. Finding Hope for FRRS1L has no paid staff and minimal overhead costs so that all donations go to funding treatment. Every dollar goes directly to treat Everly and her Frizzle friends from around the world in our upcoming Frizzle Clinical Trial.

DONATE TODAY

Watch last year’s race!

2025 RACE RECAP

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Young girl lying in a hospital bed, wearing a white knit hat, with an oxygen tube near her nose, and patches of medical tape on her face, surrounded by pink and gray blankets with unicorn and floral patterns.
A young girl with glasses and a big smile sitting in a specialized wheelchair with a glass tray in front of her.
A young girl lying in a hospital bed with medical equipment surrounding her, including a ventilator, monitors, and IV drips, in a hospital room.
A young girl with a bandage on her arm sleeps in a hospital bed with an oxygen mask on her face. She has gold hair tied in a topknot, wears a pajama with animal prints, and is holding a brown plush giraffe stuffed animal.
A girl in a wheelchair with a pink and black frame, wearing glasses, a purple shirt with ruffled sleeves, and leg braces, is being checked by an adult for a fever at home.
A hospital room with a patient lying in a bed connected to medical monitors and equipment, with various tubes and wires attached.
A young girl with glasses and a harness on her head is sitting in a specialized wheelchair with a black tray table, inside a home.
Two young girls in a classroom, one lying in a wheelchair covered with a black blanket with pink and white floral patterns, the other sitting on a chair holding the first girl's hand and smiling.
A young girl lying on her stomach on a hospital bed with a diaper, being attended to by two healthcare workers in a therapy or medical setting, with medical equipment, toys, and wheelchairs nearby.
A young girl sitting in a wheelchair outdoors, wearing a red Columbia visor, clear glasses, and a floral dress. She is smiling and appears happy.
A young girl in a specialized wheelchair riding a pink stationary exercise bike with assistance from a woman in colorful scrubs, inside a therapy or rehabilitation room with exercise equipment and a large yellow exercise ball in the background.
A young girl with glasses, a helmet, and colorful bracelets sitting in a wheelchair outdoors at a school playground with a brick building and other children playing in the background.
A young girl in a motorized wheelchair with a transparent tray in front of her, wearing glasses and colorful shorts, being pushed by an adult outside on a sidewalk near a grassy area.
A young child with curly red hair lying in a hospital bed, wearing oxygen tubes, clear glasses, and a colorful shirt with animal prints, appearing unwell.
Three children in costumes celebrating at home, one standing with a cowboy hat and toy sheriff badge, one lying on the couch with a party hat and injuries, and a third lying on the floor with a big smile.
Child in a hospital bed in a hospital room, connected to medical tubing and wearing a giraffe print hospital gown.
A young boy with blue eyes lies in a hospital bed, wearing a blue hospital gown with dog prints, a nasal cannula providing oxygen, and is resting on a pillow.
Three children in Christmas pajamas standing in front of a decorated Christmas tree, with one in a wheelchair, inside a home.
A young girl with light brown hair and bright eyes lying on a bed with a pink and white floral pillow, smiling at the camera.
A woman is comforting a young girl lying on a hospital bed, with the woman gently touching the girl's forehead.
A smiling baby girl wearing a yellow headband with a bow, floral dress, and long-sleeve white shirt, being held by an adult.
A woman and a young girl with glasses sitting on a brown leather couch, smiling and hugging.
A smiling young girl wearing glasses, a birthday hat, a white top, and rainbow-colored tutu, sitting on a wooden chair.
A man and a young girl sitting outdoors in a green backyard, smiling, with the man embracing the girl who is wearing glasses and a green harness.
A young girl lying in a hospital bed with medical tubes and equipment, wearing a colorful hospital gown, covered with a blue pillow and a blue foam pad on her legs, with rainbow-colored rings beside her.
A young girl lying in a hospital bed with balloons around her, some with birthday-themed designs. She appears to be resting or recovering.
Young girl in a wheelchair looking at a screen inside a bus, with road and cars visible through the window.
A young girl is lying on a blue patient rescue cot with head and leg braces, surrounded by medical equipment in a clinical setting.
A young girl lying in a hospital bed with an IV line in her hand, looking at the camera with a calm expression.
Girl with glasses and colorful braids sitting in a decorated birthday party room with balloons, a pink tablecloth, and pink party hats.
Child in a wheelchair dressed as a pirate, wearing a black and white striped bandana, glasses, and a costume with a red vest, black harness, and striped skirt.
A person standing between two children in strollers on a sidewalk in sunlight.
A young girl lying in a hospital bed with medical tubes connected to her, wearing glasses and a hospital gown with a dog pattern, with a colorful tray of rings nearby.
A young girl in a hospital chair wearing glasses and a nasal cannula, covered with colorful blankets, with medical equipment nearby.
Three children lying on a bed, smiling and making playful faces, with a cream-colored quilted bedspread.
A young girl in a pink shirt with a bionics headset attached to her head, sitting in a specialized wheelchair with arm supports in a hospital or medical facility.
A young girl with blonde hair in a ponytail, wearing glasses and a blue polka dot dress, sitting in a car seat with a harness, smiling and showing missing front teeth.
A smiling young girl lying in a hospital bed with a nasal oxygen tube on her face, wearing purple pajamas with dog and bone patterns, surrounded by stuffed animals, giving a thumbs-up with her right hand.
A young child with glasses, wearing a pink and white striped hat and pink striped outfit, lying on a colorful play mat with a road and city design, on their stomach, looking at the camera.
A young girl with glasses, blonde hair in pigtails, smiling widely with missing front teeth, wearing a colorful shirt and sitting in a high chair with arms raised.
A young child with blue eyes lying in a hospital bed, wearing a white medical cap and blue hospital gown with animal print, holding a pacifier in his mouth and looking at the camera.
A man wearing a face mask holding a young girl in a hospital room.
Child with medical equipment in hospital bed, lying with head and upper body propped up, legs in braces, connected to various tubes and monitors, with photographs on wall in background.
An elderly woman with short white hair and a young girl with glasses sit together. The elderly woman is holding the girl on her lap, and they are engaging in a close, affectionate moment indoors.
A young girl in a hospital bed with a walker supports a nurse or therapist as they prepare for a therapy session in a hospital room.
A young girl with glasses and blonde hair smiling while being hugged by a woman with blonde hair in a kitchen.