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She is smiling and appears happy. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/b04fab12-bdbb-4a20-b2c9-d4ecb8793cdc/Photo+Apr+29+2024%2C+2+42+18+PM.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/9e477253-a19d-43fc-809a-fb74bf35c7b6/Photo+Aug+17+2023%2C+9+10+23+AM.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/c7060f67-16b9-478d-aa93-9fe61655696b/Photo+Aug+21+2023%2C+7+20+01+AM.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/00517b9c-62fe-4e84-be10-c3af15b5bd8f/IMG_4376.jpeg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/6c0bb00c-12e4-4620-932c-fad8750ccf4f/Photo+May+12+2024%2C+3+41+53+PM+%284%29.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/fc76645b-4894-45e9-9d4a-50a9965e1fad/Photo+Dec+09+2023%2C+2+13+07+PM.jpg Everly Child in a hospital bed in a hospital room, connected to medical tubing and wearing a giraffe print hospital gown. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/476725d2-2f14-4b57-ad50-6148a1fbf97d/Photo+Dec+11+2023%2C+11+48+39+AM.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/b4b2ac77-9f30-4166-beda-84c763fa55f7/Photo+Dec+25+2023%2C+9+46+15+AM.jpg Everly Three children in Christmas pajamas standing in front of a decorated Christmas tree, with one in a wheelchair, inside a home. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/88f6556a-97a4-4dc6-b3d9-9a72744ace4a/Photo+Jan+03+2024%2C+7+33+48+AM.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/cdb22c6d-6f2d-466c-91c9-52f9d02e4a9f/Photo+Jan+22+2024%2C+6+54+01+AM.jpg Everly A woman is comforting a young girl lying on a hospital bed, with the woman gently touching the girl's forehead. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/1d2a9f48-eb07-4790-9c2a-bf4ca07dab76/IMG_8959.JPG Everly A smiling baby girl wearing a yellow headband with a bow, floral dress, and long-sleeve white shirt, being held by an adult. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/3cf1e8c2-0719-430a-a4dc-3767c5b36b4f/Photo+Jul+02+2023%2C+7+43+32+AM.jpg Everly A woman and a young girl with glasses sitting on a brown leather couch, smiling and hugging. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/9c7ecf44-fcc5-40ba-8353-73e99ba01562/IMG_0086.JPG Everly A smiling young girl wearing glasses, a birthday hat, a white top, and rainbow-colored tutu, sitting on a wooden chair. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/1fcd7699-411b-4133-bcf1-019c2bada1ce/Photo+Jul+02+2023%2C+8+12+11+AM.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/871af230-927e-48aa-b894-700f55abba96/IMG_4375.jpeg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/9fd3e20b-e634-4644-b8fd-0983c1546bc9/Photo+May+12+2024%2C+3+41+53+PM+%281%29.jpg Everly A young girl lying in a hospital bed with balloons around her, some with birthday-themed designs. She appears to be resting or recovering. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/f05801a4-345a-47db-9cb7-f0a65e82b76b/Photo+May+12+2024%2C+3+41+53+PM+%286%29.jpg Everly Young girl in a wheelchair looking at a screen inside a bus, with road and cars visible through the window. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/0484fca2-e4d5-4c72-a378-a1c5147794d1/Photo+May+12+2024%2C+3+41+53+PM+%287%29.jpg Everly A young girl is lying on a blue patient rescue cot with head and leg braces, surrounded by medical equipment in a clinical setting. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/549dc949-5dde-4c59-b40e-74616e10622e/Photo+May+12+2024%2C+3+41+53+PM.jpg Everly A young girl lying in a hospital bed with an IV line in her hand, looking at the camera with a calm expression. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/258fcd00-ecbd-484a-85a6-4fb8d583f7e2/Photo+Oct+07+2023%2C+2+25+10+PM.jpg Everly Girl with glasses and colorful braids sitting in a decorated birthday party room with balloons, a pink tablecloth, and pink party hats. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/15ab6165-20b0-41f6-9217-97a9ab5baf50/Photo+Oct+31+2023%2C+7+01+09+AM.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/0d3b0c42-fd90-4a2e-8c6a-9cd3d3f79293/Photo+Sep+06+2024%2C+7+50+33+AM.jpg Everly A person standing between two children in strollers on a sidewalk in sunlight. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/6118d6a3-af5c-451a-971a-979a1af8a918/C6E7E4EF-A146-4DF1-BA65-FD45E25283C4.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/9b1a851c-be0b-4d5b-a697-8b197f92e01c/C467A344-6961-428F-9ABD-7B4A75EB6AF8.jpg Everly A young girl in a hospital chair wearing glasses and a nasal cannula, covered with colorful blankets, with medical equipment nearby. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/85916761-65db-4667-b1b1-dad70cc4106e/green+family+040.jpg Everly Three children lying on a bed, smiling and making playful faces, with a cream-colored quilted bedspread. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/d8f0509d-91f5-4fe1-889f-a88b38b19f70/image000000%282%29.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/848ae1fb-7a52-44ef-a222-beaf18678717/IMG_0364.JPG Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/c6fb8048-3b86-43ba-b57a-8de659d90024/IMG_9752.jpeg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/d88154cc-ff70-4207-8cb1-bf72e0b04ea7/IMG_0548.JPG Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/4812aabe-b4b0-4934-97e4-92bc1313beb1/IMG_4194.JPG Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/122c11a6-cc6c-4ae6-9262-5a6e2b41d37d/IMG_5884.JPG Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/d44866d1-f771-472c-8996-fa611379d795/IMG_6103.jpeg Everly A man wearing a face mask holding a young girl in a hospital room. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/6ddb22cc-80d5-4275-92a8-edc6b5d57cc1/IMG_6402.jpeg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/669febd3-0542-46a5-968b-4cba0a81eafc/IMG_6842.JPG Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/9a4d611a-20a1-4f95-be8d-0ef9ae304c89/IMG_6950+%281%29.jpg Everly 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. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/3a9bab30-aeb3-4e4c-8d86-2ed01da1d08d/IMG_8915.jpg Everly A young girl with glasses and blonde hair smiling while being hugged by a woman with blonde hair in a kitchen. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/9ad662ab-4360-4535-bd50-82639f6fe578/Photo+Aug+04+2025%2C+11+57+45+AM.jpg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/b0b9c137-e44e-429a-b05d-94b1d920a28d/Photo+Jun+23+2025%2C+12+27+00+PM.jpg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/3da328c7-8f67-47da-8a4d-55bc6deb877a/KO-logo-final-3-white.jpg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/b4032fde-5336-4c2a-aa67-4e80bfc558f6/ICG.png https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/c74a9f1a-c97a-4427-82df-1ce50767cc52/IMG_4982.png https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/e8075178-2691-4bb0-90f0-6d30e0ae8bbf/2020%2BLogo.jpg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/d05a8850-5046-4bec-ab4f-b8dd0aa8f49a/Splash%2BLogo%2BHighlited%2BWave%2Bno%2BBkgrnd.jpg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/6b8ffca9-14a5-4c92-aa27-8e54173e2888/chiro.png https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/11ac3820-7811-4a9b-a8dd-7d35db84e8b4/Height+of+Health+logo.png https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/4dbe1193-e0b3-4094-b12e-541453a379de/Runners-Roost-Fort-Collins-Running-Shoes-Fitness-Clothes-Gear-logo.png https://www.frrs1l.org/nyc daily 0.75 2026-05-06 https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/db075367-1613-4216-aea4-6d4945986da9/image3.jpeg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/fa370cec-646b-408b-bf2b-06209afd7c07/20240503_113539.jpg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/11f15adb-6849-4132-b9c7-7ecb759ed495/Photo+Sep+15%2C+7+51+00+AM.jpg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/44e5f6ba-a594-4f67-b2b4-db43ae338d0a/IMG_4375.jpeg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/60610fbe-3436-4b77-94c2-8a51dd397645/Messenger_creation_45698c11-d0c9-4b7d-816d-3f439e30cd84.png https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/30a7354f-865d-4af3-8d27-e54306c4ad61/Screenshot_20220421-040947_Facebook.jpg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/886c97bd-69e4-4b5e-810a-48055e8e4e37/26d9dafa-2035-4b01-bede-1bc62bcfca19.JPG https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/b0059ead-20a8-4398-8663-330e3593b0ce/PicsArt_08-26-05.21.39.jpg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/784bb88a-9d78-4eab-9e7e-d35a25b252bc/IMG_4123.jpeg https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/67dca3d4-60de-43aa-8cfd-b518d2882343/20240503_132452.jpg https://www.frrs1l.org/givinghope daily 0.75 2025-12-17 https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/5b885055-5513-4644-b5d6-deef00b0be85/IMG_0083.jpg https://www.frrs1l.org/donate-assets daily 0.75 2025-12-17 https://www.frrs1l.org/documentary daily 0.75 2025-12-17 https://www.frrs1l.org/kerry daily 0.75 2025-12-17 https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/38c54493-a2e8-4c77-9b23-beeb70a21aea/IMG_5462.JPEG https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/720a5db8-d293-4fb7-8233-1ef73c235cd4/findinghope-logo-full-color-rgb-271px%4072ppi.png https://www.frrs1l.org/videos daily 0.75 2026-05-04 https://www.frrs1l.org/what-is-frizzle-frrs1l daily 0.75 2026-02-17 https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/54fdb804-6043-439c-8e90-5c2779c2b69f/frrs1l+research+image.png https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/57fa5fdf-ea69-4bed-94a1-63456fb75ed1/globe_white_icon.png https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/dc89c030-c569-4cf7-8f6e-381010ca3fed/disease.png https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/fc950f92-599d-41f1-b241-9912507af474/Providence+hospitl+with+feeding+tube+and+respiratory+distress.jpg What is Frizzle (FRRS1L) - Additional Resources FRRS1L gene disorder presents in children through epilepsy, progressive dyskinesis (abnormal movements), developmental delay, diffuse hypotonia, cortical and cerebellar volume loss, and gradual loss of responsiveness to the environment. For information on various types of seizures please check out the Epilepsy Foundation page on Seizure Types. For information on movement disorders please see Mayo Clinic movement disorders page. For information on developmental delays please see the CDC’s page on developmental disabilities. For information on Hypotonia please see the Boston children’s hospital page on Hypotonia. https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/e228026e-721d-4013-843b-c98ce79eb38a/Photo+Nov+26%2C+4+15+10+PM.jpg What is Frizzle (FRRS1L) - REGISTER your Frizzle Child/Children By registering your child/children with Finding Hope for FRRS1L, it provides valuable information that will help us better understand and track the global map of the Frizzle (FRRS1L) community; it will inform researchers; and it also allows us to keep you informed through email updates and news on the progress towards clinical trials for gene replacement therapy. Registering your child is completely optional. https://www.frrs1l.org/research daily 0.75 2026-05-13 https://www.frrs1l.org/treatmentdevelopment daily 0.75 2026-05-06 https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/33559af3-6895-497f-9821-a30a1d6a74a7/treatment+dev+process+graphic.png https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/4215cc08-3375-47a7-8c88-8786f17175bd/Photo+Oct+05+2025%2C+11+01+49+AM+%282%29.jpg https://www.frrs1l.org/register-1 daily 0.75 2026-06-29 https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/aaef7692-bf16-4405-8766-653801adbbe8/Register+Frizzle+child_web+banner2.png https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/e228026e-721d-4013-843b-c98ce79eb38a/Photo+Nov+26%2C+4+15+10+PM.jpg Patient Registration - REGISTER your Frizzle (FRRS1L) Child By registering your child/children with Finding Hope for FRRS1L, it provides valuable information that will help us better understand and track the global map of the FRRS1L community; it will inform researchers conducting a natural history study of FRRS1L; and it also allows us to keep you informed through email updates and news on the progress towards developing gene replacement therapy treatment. Registering your child is completely optional. https://www.frrs1l.org/how-to-help-1 daily 0.75 2025-12-17 https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/d383abe9-17ac-4e2c-ba4f-95b95fc42f25/give.png Help Us https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/f57a9451-db0e-4b73-88ad-6dbc828a4a63/share.png Help Us https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/bb386872-6255-4d29-83da-d93331a7cc89/ambassador.png Help Us https://images.squarespace-cdn.com/content/v1/6199b89cf1d89463ad3d4203/d4eb849d-5728-4444-af1c-4395955edffa/hands.png Help Us