https://therorybellefoundation.org/blog daily 0.75 2026-05-12 https://therorybellefoundation.org/blog/nars1-family-stories-the-anderson-family-usa monthly 0.5 2026-05-12 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/286bf24e-2a3f-48e3-8c44-95979c01dc01/IMG_5192.JPEG Blog - NARS1 Family Stories - The Anderson Family, USA - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/01041063-527d-414f-a0db-33580b34e9fd/IMG_7221.jpeg Blog - NARS1 Family Stories - The Anderson Family, USA - James was born with microcephaly and had difficulty gaining weight early on. From the beginning, there were signs that something wasn’t quite right. Weekly visits to the pediatrician became part of life, and by 10 months old, James had his first neurology appointment after missing key milestones. At that stage, everything was uncertain. Scans were inconclusive, and James was labeled globally delayed. Like many families, Nancy and Bud held onto hope that with the right support, he might catch up. He began Early Intervention, with physical and occupational therapy both at home and in the hospital. Progress came, but slowly. James crawled at 15 months and walked at 21 months, and over time it became clear that the gap between his age and development was growing. Over the years, James was supported by neurologists, orthopedists, and gastroenterologists, alongside speech therapy, OT, and PT throughout his school years. He moved through different educational settings until he aged out of the public school system at 22. Despite all of this, a diagnosis remained out of reach for many years. It wasn’t until James was 29 that the family finally had an answer. https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/db49cc4d-01f8-4cc1-932a-52df9474a751/IMG_7629.JPEG Blog - NARS1 Family Stories - The Anderson Family, USA - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/6708e3a7-aaae-4cef-8f37-c1c794ea18a8/12E88771-8E61-4825-97DF-7B84B5A6BE7A.jpeg Blog - NARS1 Family Stories - The Anderson Family, USA - What brings joy Despite the challenges, there is so much joy in James. He has a huge smile and a way of bringing people together. He makes an impression wherever he goes, whether that’s at a game, a restaurant, or just out in the community. “You cannot help but feel happy when you are around him with his huge smile and love of life.” Nancy describes him as someone who brings out the best in people. One memory that stands out is a simple night out with friends at a restaurant where one of his favorite bands was playing. Seeing other people connect with James and genuinely enjoy being around him stayed with Nancy long afterward. “Those memories help us so much when things get tough.” https://therorybellefoundation.org/blog/why-animal-models-matter-in-nars1-research monthly 0.5 2026-04-24 https://therorybellefoundation.org/blog/understanding-genetic-report-nars1 monthly 0.5 2026-03-24 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/e8c35c04-a06b-4a5d-bcce-59c5cbe33e72/Understanding+your+variant.++%282%29.png Blog - Understanding Your Child’s Genetic Report - A quick recap: DNA, genes and chromosomes DNA DNA is the long chemical code that carries all the instructions for how the body grows and works. DNA is a simple alphabet of just four letters: A, C, T and G. Genes DNA is divided into specific sections called genes. They are like individual recipes written along the DNA. Each gene tells the body how to make a specific protein that performs an important job. The NARS1 gene provides instructions for making the NARS1 protein, which helps cells build other proteins that the body needs. https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/19643aa8-a667-4558-9670-4478d3e86951/Understanding+your+variant.++%283%29.png Blog - Understanding Your Child’s Genetic Report - At first glance this looks complicated, but each part is simply describing a different aspect of the variant. Let’s break it down. At first glance this looks complicated, but each part is simply describing a different aspect of the variant. Let’s break it down. https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1b9f6c98-3396-4bdb-a5ff-37b1cca2bded/Understanding+your+variant.+.png Blog - Understanding Your Child’s Genetic Report - How to read your variant Now that you have all of this information, how do you use it to read and understand your variant? This diagram highlights the key pieces of a variant description so you can quickly see what each part means. Example: NARS1 c.268C>T p.(Arg90Ter) NARS1 – the gene involved c.268C>T – the DNA-level change p.(Arg90Ter) – the protein-level change https://therorybellefoundation.org/blog/nars1-family-stories-the-lo-re-family-italy monthly 0.5 2026-01-22 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/45a2d6fd-a7d7-464c-8060-d5c0580f6a7e/1000118220.jpg Blog - NARS1 Family Stories - The Lo Re Family, Italy - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/b1166082-fce9-4939-b77e-93182836d1f0/1000101085.jpg Blog - NARS1 Family Stories - The Lo Re Family, Italy - The Journey to Diagnosis During pregnancy, doctors identified a Robertsonian translocation involving chromosomes 14 and 21, but this did not appear to cause any problems. From birth, however, feeding was difficult. Gabriel vomited forcefully after almost every feed, and by three months old he was admitted to hospital due to poor weight gain and the fact that his head circumference had not increased. It was at this point that doctors identified microcephaly and a psychomotor developmental delay. Gabriel began physiotherapy and was followed by neuropsychiatry specialists. Initial genetic testing showed a microduplication of chromosome 22, but as time went on, his symptoms continued to increase and did not fully align with that diagnosis. https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/d9cdd6c0-cfec-4120-bfef-715233757973/1000104678.jpg Blog - NARS1 Family Stories - The Lo Re Family, Italy - Everyday Life Like with most NARS1 families, daily life for the Lo Re family is demanding and structured entirely around Gabriel’s care, particularly his feeding. Because he is an active child with a strong desire to move, daytime feeding cannot be delivered continuously via a pump. Instead, Gabriel receives nutrition by syringe every hour throughout the day, alongside regular medication. At night, once he is asleep, continuous feeding runs until morning. https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/feaeaba5-9477-4d45-9792-78746a2ccea4/Little+boy+-+Gabriel+-+sat+on+a+play+mat+holding+an+elf.+Gabriel+is+wearing+glasses+and+a+blue+jumper Blog - NARS1 Family Stories - The Lo Re Family, Italy - Finding strength and support Despite the challenges, Gabriel brings his family immense joy. The moments when he is well, laughing and happy, mean everything to them. His small progress, which might seem insignificant to others, is celebrated deeply at home. In the hardest moments, what helps most is Gabriel himself. His determination, strength, and desire to live and laugh give his parents the courage to keep going. Support from others has also made a difference. School has been an important part of Gabriel’s life, helping him learn new skills and providing an environment where he is supported and encouraged. His classmates show him kindness and care, something his parents are deeply grateful for. https://therorybellefoundation.org/blog/nars1-family-stories-the-dregney-family monthly 0.5 2026-01-22 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/a937c075-c87f-4082-a4b4-ffdc6baf55d2/image0.jpeg Blog - NARS1 Family Stories - The Dregney Family, USA - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/f1e05857-e3c5-4d01-85d7-12911ff20d3f/image1.jpeg Blog - NARS1 Family Stories - The Dregney Family, USA - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://therorybellefoundation.org/blog/rory-belle-fall-fundraiser-detroit-2025 monthly 0.5 2025-11-19 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/db420d4d-33cf-4197-b09d-4f263e9d36b7/Screenshot+2025-11-18+at+13.42.11.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473451656-NUFKAM7N2CW12GME9L39/Screenshot+2025-11-18+at+13.33.26.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473437020-LD9VCU43MADS0WKSOITS/Screenshot+2025-11-18+at+13.30.09.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473440190-YNVNAPGCG6FSBCCJ7XY6/Screenshot+2025-11-18+at+13.30.46.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473441043-VTNSVOWI664JB0E8IWWC/Screenshot+2025-11-18+at+13.31.07.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473443427-RV9DSK5SUCLGXHE1LPWI/Screenshot+2025-11-18+at+13.31.16.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473443854-LL670G1NYR25WK4EUXVB/Screenshot+2025-11-18+at+13.31.59.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473445638-XCR1WIVOMIUS7DKIIBZX/Screenshot+2025-11-18+at+13.32.08.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473448259-QZFQN5FPBTDG5F83IT6D/Screenshot+2025-11-18+at+13.32.18.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473449639-E6Z3RG8DB4SNJ8PTZLZA/Screenshot+2025-11-18+at+13.32.31.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473450365-CQUMXVTLHA1YL3ZWPMQ2/Screenshot+2025-11-18+at+13.33.12.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473452743-TR4SN96JYOVI48LQW5PP/Screenshot+2025-11-18+at+13.33.45.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473455375-LXWERO3D3PTV8I8QWU9A/Screenshot+2025-11-18+at+13.34.16.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473456366-ADOGGT382TTW3VYKP6PI/Screenshot+2025-11-18+at+13.41.24.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473458627-RMLBF1IP8U5RGJ1EBHRT/Screenshot+2025-11-18+at+13.41.58.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473669552-G1FKOZ0ROAR16P4YN0K6/Screenshot+2025-11-18+at+13.29.39.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/1763473692118-2ZNO8DHRRHE36LQR4LGM/Screenshot+2025-11-18+at+13.41.36.png Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/350baf04-ca8c-4bfb-9150-66759f0940d5/578496981_815577967927130_5955314624916343943_n.jpg Blog - A Night at the Market: Our 2025 Fall Fundraiser in Detroit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://therorybellefoundation.org/blog/understanding-nars1-how-yeast-can-help-unlock-the-mysteries-of-nars1-disorder monthly 0.5 2025-11-19 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/5531f2e4-5d77-46c6-ae75-d49e7508abf1/laboratoorne_pagaripc3a4rm_saccharomyces_cerevisiae_agariplaadil.jpg Blog - Understanding NARS1: How Yeast Can Help Unlock the Mysteries of NARS1 Disorder - Make it stand out Drop-inoculation of laboratory baker´s yeast (Saccharomyces cerevisiae) mutants on agar plate. By Rainis Venta (Own work) [CC BY-SA 3.0], via Wikimedia Commons https://therorybellefoundation.org/blog/family-researcher-gathering-croatia-2025 monthly 0.5 2025-11-19 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/88481497-3bd8-468a-85fc-4e99e9f5c7f1/The+Rory+Belle+Foundation+-+Family+and+Researcher+Gathering+Croatia Blog - Bringing Our Community Together: Reflections from the Croatia Family & Researcher Gathering https://therorybellefoundation.org/blog/new-insights-into-nars1 monthly 0.5 2025-09-11 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/97c00510-2155-4b43-842f-395c18ebb9ab/IMG_5800.jpg Blog - New Insights into NARS1: Understanding How Mutations Affect Our Children https://therorybellefoundation.org/blog/category/Events monthly 0.5 https://therorybellefoundation.org/blog/category/Research monthly 0.5 https://therorybellefoundation.org/blog/category/Families monthly 0.5 https://therorybellefoundation.org/blog/category/Resources monthly 0.5 https://therorybellefoundation.org/events daily 0.75 2026-04-06 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/afc01b38-845e-4ac9-910b-ea83a77ba8d0/gala+check.jpg Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/8209d62a-9af2-44e0-a4d2-d2e0ba09e23c/Copy+of+detroit+race+1.jpg Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/f804ef39-5581-4d03-a5ee-d407825f11d7/Rorybelle-155.jpg Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/537ade3b-0fe2-4415-bb1d-55e63488fc5c/Copy+of+Rorybelle-119.jpg Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/8d366cd6-18d6-4f8f-8704-31c20528d9e7/Copy+of+Copy+of+marathon+2.jpg Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/f792cb4a-df84-4ff7-83b5-89aba054eefa/466034566_541877565297173_6862149260120605096_n.jpg Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/0dd5bdc7-5873-4110-b3f5-132a1f8fb1d5/466073784_541877321963864_7734691691528472390_n.jpg Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/513aadc9-118f-4da7-ae2a-78663dd7feac/Screenshot+2025-01-12+163854.png Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/b338db64-261a-4c10-a240-b09d7194bec2/Screenshot+2025-01-12+164225.png Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/3184d64b-36fd-494e-9ee5-d60f41e33714/Screenshot+2025-01-12+164148.png Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/c90eb7d1-834a-41ed-b391-e0aa386fc33c/Screenshot+2025-01-12+164113.png Events https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/b421759f-471b-43e9-af0d-b643c8d80ffd/Screenshot+2025-01-12+164041.png Events https://therorybellefoundation.org/events/a-night-for-nars1 monthly 0.5 2026-04-06 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/af166af5-74a9-4d8c-ac28-7141ee2969a6/Heading.jpg Events - A Night for NARS1 - Make it stand out https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/533ceed3-4b60-4330-b7b3-e702af6ba76f/Sponsor+banners+%281%29.png Events - A Night for NARS1 - Make it stand out If you’re interested in sponsoring you can view our packages here. https://therorybellefoundation.org/events/uq6a7lpszsuz6y3omzxhbbz5bpt4oq monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/cad9adc4-ccb2-44ac-ab3a-aed6ab31e1ab/Screenshot+2026-03-25+at+15.17.54.png Events - The 7th International Conference onRare Diseases - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://therorybellefoundation.org/events/rare-disease-day-2026 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/e55a3d4d-ee3d-4d4b-bf3f-d2a14e4c7ffb/Screenshot+2026-03-25+at+15.03.57.png Events - Rare Disease Day 2026 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://therorybellefoundation.org/events/11th-annual-summit-on-rare-diseases-and-orphan-drugs monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/41b729f8-d85b-43c7-8400-bf4c9fb69dc7/Screenshot+2026-03-25+at+14.58.27.png Events - 11th Annual Summit on Rare Diseases and Orphan Drugs - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://therorybellefoundation.org/events/ecrd-2026-conference-on-rare-diseases monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/fac1b398-3c97-4200-8de6-e098075a1f41/Screenshot+2026-03-25+at+14.45.31.png Events - ECRD 2026 (Prague & Online) - Conference on Rare Diseases - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://therorybellefoundation.org/events/the-translational-science-of-rare-diseases-symposium monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/440f2991-699e-4325-8036-382494093763/Screenshot+2026-03-25+at+14.32.56.png Events - The Translational Science of Rare Diseases Symposium - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://therorybellefoundation.org/events/2026-scientific-symposium-treatment-of-rare-diseases-from-research-to-patients monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/ee8b5dfe-2083-4c99-9c3d-24fc71a33e43/Screenshot+2026-03-25+at+11.42.18.png Events - 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Boston Family Gathering - Our next in-person NARS1 Family Gathering, is in Boston, USA from Friday 7th – Sunday 9th August 2026. https://therorybellefoundation.org/events/run-for-nars1-worldwide-5km monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/43cab6a7-879b-4f4a-83f8-f27f59a8e5d0/Run+for+Nars1.png Events - Run for NARS1 - Worldwide 5km - Wherever you are in the world, you can take part. On April 18th, our community will once again come together for the Rory Belle Foundation Worldwide 5km — raising vital funds to accelerate research, improve understanding, and move us closer to treatments for NARS1 disorder. After a successful first year, with families, friends and supporters running side by side across countries and time zones. This year, we want to make it even bigger https://therorybellefoundation.org/events/slinging-suds-hogshead-brewery monthly 0.5 2026-03-22 https://therorybellefoundation.org/events/family-researcher-gathering monthly 0.5 2026-03-22 https://therorybellefoundation.org/events/a-night-at-the-market monthly 0.5 2026-03-22 https://therorybellefoundation.org/events/run-for-nars1-worldwide-5k monthly 0.5 2025-09-03 https://therorybellefoundation.org/events/vljvjb68f0e6pdmoyxi36j8g2yn050 monthly 0.5 2025-09-03 https://therorybellefoundation.org/events/wine-tasting-with-the-rory-belle-foundation monthly 0.5 2025-09-03 https://therorybellefoundation.org/events/casino-night-in-minneapolis monthly 0.5 2025-09-03 https://therorybellefoundation.org/events/event-one-7hljs monthly 0.5 2025-09-03 https://therorybellefoundation.org/family-resources-archive daily 0.75 2026-05-01 https://therorybellefoundation.org/family-resources-archive/nars1-patient-passport monthly 0.5 2026-04-20 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/ffcd4b6d-07a9-4f33-a479-40efaef524e4/Screenshot+2026-04-20+at+13.41.51.png Family Resource ARCHIVE - NARS1 Hospital Passport - A simple, personalised document to help clinicians understand your child and provide safe, informed care, especially in hospital or emergency settings. 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