https://therorybellefoundation.org/blog daily 0.75 2026-03-24 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 - 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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 2026-03-30 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/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 - 2026 Scientific Symposium "Treatment of rare diseases: from research to patients" - 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-research-conference-2026 monthly 0.5 2026-03-25 https://images.squarespace-cdn.com/content/v1/671bc699035dff156dc00a61/87df63a0-c1b2-4e6c-a3b9-02c2444c49ab/Screenshot+2026-03-25+at+11.21.22.png Events - 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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. 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