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2024 Impact Report & 2025 Goals: FOXG1 Research Foundation - Make it stand out The FOXG1 Research Foundation 2024 Impact Report https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677268-59KB00A3R7NMTOCK56CI/11.png News / Blog - 2024 Impact Report & 2025 Goals: FOXG1 Research Foundation - Make it stand out FOXG1 Research Foundation 2024 Impact Report https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677276-UNXCUZT0XY2K8GICUI6B/Screenshot+2025-01-07+at+11.44.34%E2%80%AFAM.png News / Blog - 2024 Impact Report & 2025 Goals: FOXG1 Research Foundation - Make it stand out FOXG1 Research Foundation Goals for 2025 https://www.foxg1research.org/news/2024/10/16/when-a-miracle-cure-is-left-on-the-shelf-t26lx monthly 0.5 2026-04-03 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/91c6d5cf-71da-4891-9848-e30b4249acdf/Screenshot+2026-04-03+at+7.48.04%E2%80%AFAM.png News / Blog - Bloomberg BusinessWeek: When a Miracle Cure Is Left on the Shelf - Make it stand out FOXG1 Research Co-founder Nicole Johnson in Bloomberg Business Week on Rare Disease Gene Therapy https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/14eb16e4-a984-4f8b-8827-2dba907d3aab/Screenshot+2026-04-03+at+7.48.28%E2%80%AFAM.png News / Blog - Bloomberg BusinessWeek: When a Miracle Cure Is Left on the Shelf - 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/v1/67ec879db06f3e63e35e9ed4/1743554677293-KSBOB62K9917WHDKE5MM/CleanShot%25252B2024-10-16%25252Bat%25252B12.10.32%252525402x.jpg News / Blog - Bloomberg BusinessWeek: When a Miracle Cure Is Left on the Shelf - Make it stand out Nicole Johnson and her daughter, Josie. Photographer: Donna Alberico for Bloomberg Businessweek https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677300-M4GFVTLT90RORVOA2U2Y/CleanShot+2024-10-16+at+12.08.37%402x.png News / Blog - Bloomberg BusinessWeek: When a Miracle Cure Is Left on the Shelf - Make it stand out Johnson’s FOXG1 Research Foundation became a “virtual biotech company,” funding a lab with about 20 researchers to study the disease. Photographer: Donna Alberico for Bloomberg Businessweek https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677310-9BPRH52QED5STF0CH9F9/CleanShot+2024-10-16+at+12.09.48%402x.png News / Blog - Bloomberg BusinessWeek: When a Miracle Cure Is Left on the Shelf - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2024/10/14/based-on-hope-and-love-ub-celebrates-opening-of-foxg1-research-center-s577c monthly 0.5 2025-04-30 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677323-PE6SUASU8LSG8D5BH1OX/FullSizeRender.jpeg News / Blog - Based on ‘hope and love,’ UB celebrates opening of FOXG1 Research Center - Make it stand out The FOXG1 Research Foundation cuts the ribbon at the FOXG1 Research Center opening ceremony at UB. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677334-R234HLFRBPZKTQATGQ6H/1727278245403.jpg News / Blog - Based on ‘hope and love,’ UB celebrates opening of FOXG1 Research Center - Make it stand out Soo-Kyung Lee (seated, left) and Jae Lee (right) listen to speakers during the ceremonial ribbon cutting for the FOXG1 Research Center. Photo: Douglas Levere https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677343-BSQMGND57T86F4G41LWH/1727278388260.jpg News / Blog - Based on ‘hope and love,’ UB celebrates opening of FOXG1 Research Center - Make it stand out The Lees take ribbon-cutting attendees on a tour of the research center in Cooke Hall. Photo: Douglas Levere https://www.foxg1research.org/news/2024/7/30/charles-river-collaborates-with-patient-advocacy-group-foxg1-research-foundation-to-advance-rare-disease-gene-therapy-development-hpta3 monthly 0.5 2025-04-30 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677357-9F6XYQZBFMQ0LCMPYLO4/CR-000172.jpeg News / Blog - Charles River Collaborates with FOXG1 Research to Advance Gene Therapy - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2024/6/10/new-publication-shows-groundbreaking-result-in-foxg1-aav9-gene-therapy-studies-rescuing-structural-brain-abnormalities-2e4ca monthly 0.5 2025-09-29 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677370-IFT4Q49B5TPOPW5XYL4N/Screenshot+2024-06-10+at+9.49.01%E2%80%AFAM.png News / Blog - Groundbreaking FOXG1 AAV9 gene therapy studies; rescuing structural brain abnormalities - 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/v1/67ec879db06f3e63e35e9ed4/1743554677377-GWKQYYOODOR3BZBV52OK/fx1_lrg.jpg News / Blog - Groundbreaking FOXG1 AAV9 gene therapy studies; rescuing structural brain abnormalities - Make it stand out FOXG1 AAV9- Gene Therapy Data from FOXG1 Research Center at UB | Graphic Abstract https://www.foxg1research.org/news/2024/5/13/foxg1-research-foundation-asgct-recap-gt-on-track-to-a-foxg1-gene-therapy-5fhwm monthly 0.5 2025-11-21 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677392-OD1UZ1PP6UG00ZHBTXWV/IMG_6483.jpeg News / Blog - FOXG1 Research Foundation ASGCT Recap -> On Track to a FOXG1 Gene Therapy - Make it stand out The FOXG1 Research Foundation at the American Society of Gene and Cell Therapy (ASGCT) conference in Baltimore, Maryland 2024 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677401-YVKRENYK7SDR53USGDVM/IMG_9115.jpeg News / Blog - FOXG1 Research Foundation ASGCT Recap -> On Track to a FOXG1 Gene Therapy - Make it stand out Dr. Peter Marks, Director of the Center for Biologics Evaluation and Research (CBER) at the FDA https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677410-8VTYL35L87VLB7UZKFMF/IMG_1324.jpeg News / Blog - FOXG1 Research Foundation ASGCT Recap -> On Track to a FOXG1 Gene Therapy - Make it stand out FOXG1 Research Center of Excellence at the University at Buffalo poster: AAV9-FOXG1, a gene therapy vector, in a mouse model of FOXG1 syndrome https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677419-5C1GMFGYKKLI8PIDYEV5/Screenshot+2024-05-13+at+5.33.50%E2%80%AFPM.png News / Blog - FOXG1 Research Foundation ASGCT Recap -> On Track to a FOXG1 Gene Therapy - Make it stand out Estimating Patient Prevalence for Complex Neurodevelopmental Disorders: The Emerging Face of FOXG1 Syndrome https://www.foxg1research.org/news/2024/3/5/q2-foxg1-syndrome-research-amp-development-update-ddd57 monthly 0.5 2025-05-22 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677432-6PX882IGXQR6TC0P8HOD/Screenshot+2024-03-12+at+8.43.22%E2%80%AFPM.jpg News / Blog - FOXG1 Research Foundation 2024 Q2 Research & Development Update - 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/v1/67ec879db06f3e63e35e9ed4/1743554677440-N0LIFXM8ECLTGWLLWNGK/IMG_4771.jpg News / Blog - FOXG1 Research Foundation 2024 Q2 Research & Development Update - Make it stand out FOXG1 Research Foundation Chief Scientific Officer, Dr. Soo-Kyung Lee and Chief Drug Development Officer, Dr. Gai Ayalon at the FOXG1 Research Center at the University at Buffalo/ https://www.foxg1research.org/news/2024/3/4/foxg1-research-foundations-nasha-fitter-speaks-at-the-white-house-rare-disease-forum-rb4wx monthly 0.5 2025-04-30 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677454-AW5L3Z3KTFDXROQDHCYG/Screenshot+2024-03-04+at+5.14.50%E2%80%AFPM.png News / Blog - FOXG1 Research Foundation's Nasha Fitter Speaks At The White House Rare Disease Forum - 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/v1/67ec879db06f3e63e35e9ed4/1743554677463-CRD275ASIQ7MMKH2E7DI/Rare%2BDisease%2BForum%2BSocial%2BGraphic.png News / Blog - FOXG1 Research Foundation's Nasha Fitter Speaks At The White House Rare Disease Forum - Make it stand out FOXG1 Research Foundation co-founder Nasha Fitter is a spotlight speaker at the White House Rare Disease Forum 2024 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677471-OLZ5GQLAM1JJ64CKFKDS/Screenshot+2024-03-04+at+5.24.39%E2%80%AFPM.png News / Blog - FOXG1 Research Foundation's Nasha Fitter Speaks At The White House Rare Disease Forum - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2024/2/27/foxg1s-nasha-fitter-to-speak-at-the-white-house-rare-disease-forum-for-rare-disease-day-wjlc6 monthly 0.5 2025-02-28 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677485-EHBP6FN2L9HKVFWY8F6T/Screenshot+2024-02-27+at+3.23.24%E2%80%AFPM.png News / Blog - FOXG1's Nasha Fitter to Speak at The White House Rare Disease Forum for Rare Disease Day 2024 - Make it stand out FOXG1 Research Foundation co-founder Nasha Fitter to speak at the White House Rare Disease Forum https://www.foxg1research.org/news/2024/2/12/seizure-action-plan-world-epilepsy-day-naxbl monthly 0.5 2025-02-28 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677500-QLS1PG4EHHC6O9Y231DC/Screenshot+2024-02-12+at+12.56.16%E2%80%AFPM.png News / Blog - Seizure Action Plan: World Epilepsy Day - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2024/1/18/ub-launches-center-to-find-treatments-for-foxg1-syndrome monthly 0.5 2025-11-21 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677513-M3R4UWEG3F9JJPQIC1K6/IMG_4755.jpeg News / Blog - University at Buffalo launches center to find treatments for FOXG1 syndrome - Make it stand out The FOXG1 Research Center at the University at Buffalo led by FOXG1 parents Dr. Soo-Kyung Lee and Dr. Jae Lee, along with FOXG1 Research Foundation, co-founder Nicole Johnson, Chief Drug Development Officer Dr. Gai Ayalon, and FOXG1 grandparents Tom and Janet Horton https://www.foxg1research.org/news/2024/1/9/2023-impact-report-n3gj3 monthly 0.5 2025-02-28 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677529-UNYGJRI2P7W1Q1GFWXEI/Cover.jpg News / Blog - 2023 Impact Report - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2023/10/17/2023-year-end-campaign-a-letter-to-our-supporters-f2xec monthly 0.5 2025-02-20 https://www.foxg1research.org/news/2023/9/19/foxg1-parents-support-webinar-tell-us-abey-communications-system monthly 0.5 2025-11-21 https://www.foxg1research.org/news/2023/9/19/my-foxg1-story-written-by-abey-weitzman monthly 0.5 2025-11-21 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677554-9CZ4CUBP5LW27YAD4TRQ/IMG-5604.JPG News / Blog - My FOXG1 Story, Written by Abraham Weitzman - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2023/9/12/frf-appoints-chief-drug-development-officer-dr-gai-ayalon-wgtfx monthly 0.5 2025-05-22 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677567-QW8P9T3Q9Q3PO48YZDKZ/Gai+Ayalon+pic.jpg News / Blog - FRF Appoints Chief Drug Development Officer, Dr. Gai Ayalon - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2023/8/8/dr-soo-kyung-lee-named-foxg1-research-foundation-chief-scientific-officer-4bgwe monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677580-WG6YUTR4ARGB0UAQU27I/LeeLabGroupPhoto.jpeg News / Blog - Dr. Soo-Kyung Lee Named FOXG1 Research Foundation Chief Scientific Officer - Make it stand out Dr. Soo-Kyung Lee and the Lee Lab at the FOXG1 Center of Excellence University at Buffalo https://www.foxg1research.org/news/2023/8/3/foxg1-research-foundation-july-newsletter-7xc2y monthly 0.5 2025-11-21 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677595-TOF8T294WOUN539VTFD6/Screen+Shot+2023-07-25+at+8.17.06+AM.png News / Blog - FOXG1 Research Foundation July Newsletter - Make it stand out foxg1 research foundation newsletter July 2023 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677604-QCHG160BLQY4338PDRSG/Screen+Shot+2023-08-03+at+5.32.19+PM.png News / Blog - FOXG1 Research Foundation July Newsletter - 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/v1/67ec879db06f3e63e35e9ed4/1743554677613-V1FANDPU9A20PZEG40OF/Screen+Shot+2023-08-03+at+5.32.28+PM.png News / Blog - FOXG1 Research Foundation July Newsletter - 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/v1/67ec879db06f3e63e35e9ed4/1743554677620-EQN386FS77XG47XVSZZO/Screen+Shot+2023-08-03+at+5.34.52+PM.png News / Blog - FOXG1 Research Foundation July Newsletter - 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/v1/67ec879db06f3e63e35e9ed4/1743554677629-32LAI0MWZOG6MTWA34Z8/Screen+Shot+2023-08-03+at+5.36.36+PM.png News / Blog - FOXG1 Research Foundation July Newsletter - 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/v1/67ec879db06f3e63e35e9ed4/1743554677635-AWOMMP21JDPAARD4AY0M/Screen+Shot+2023-08-03+at+5.38.34+PM.png News / Blog - FOXG1 Research Foundation July Newsletter - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2023/6/12/combinedbrain-biorepository-currently-enrolling-participants-hnt8e monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677651-CQ7DRP8PCA1K5CKH57E9/Screen+Shot+2023-06-12+at+2.09.23+PM.png News / Blog - COMBINEDBrain Biorepository enrolling FOXG1 participants at conferences across the USA - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2023/6/8/new-childrens-book-and-digital-platform-joyfully-josie-aims-to-spark-conversations-around-disabilities-rare-diseases-and-inclusion monthly 0.5 2025-11-21 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677663-6YUDZGFLFQGHO2H82KLS/JJ-Square_Book_Mockup_Top+Cover_+No+Shadow.png News / Blog - New Children's Book and Digital Platform "Joyfully Josie" Aims to Spark Conversations Around Disabilities, Rare Diseases, and Inclusion - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2023/5/9/power-of-moms-this-mom-quit-her-job-to-find-a-cure-for-her-daughters-rare-disease monthly 0.5 2025-11-21 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677674-2YWB83SPUAZQKMDR1NV5/CafeMom_Main_Image__12_.png.jpeg News / Blog - 'Power of Moms': This Mom Quit Her Job To Find a Cure for Her Daughter’s Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2023/4/2/caretalk-podcast-why-rare-disease-research-is-so-important monthly 0.5 2025-11-21 https://www.foxg1research.org/news/2023/8/8/d0ww1xaebmh0mvrqujqzzk2059somf-tjwh6 monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677692-L9FQGFBE5FS2AI6POV86/shutterstock_2255681261-2.png News / Blog - Dr. Soo-Kyung Lee, FOXG1 Research Foundation Scientist, Earns Grant from Simon Foundation Autism Research Initiative (SFARI) for Genomics of ASD: Pathways to Genetic Therapies - Make it stand out FOXG1 Research Foundation CSO Named The Simons Foundation Autism Research Initiative (SFARI) Grantee 2022 Genomics of ASD: Pathways to Genetic Therapies https://www.foxg1research.org/news/2023/3/7/foxg1-syndrome-science-symposium-amp-parents-conference-recap monthly 0.5 2025-11-21 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677705-BCM1SBYPQSL0FIGBZ7MZ/Screen+Shot+2023-01-11+at+11.54.00+AM.png News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out The FOXG1 Science Strategy Session from the FOXG1 Syndrome Parents Conference 2022. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677712-LZZUT1IFUXURVTH7RZK0/2.png News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out Subscribe to the FOXG1 Research Foundation on YouTube. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677720-LK1TZKKKSZNYUXS80JCW/IMG_5367.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out FOXG1 Syndrome Parents Conference 2022 beach dinner. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677729-GBPBARJDT35I593ULN61/IMG_5242.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - 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/v1/67ec879db06f3e63e35e9ed4/1743554677737-NKYYIK8SUCGX54XFVY66/IMG_5445.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - 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/v1/67ec879db06f3e63e35e9ed4/1743554677746-BSHPGQ0IMRNINITZSZ27/Screen+Shot+2023-01-04+at+8.26.18+AM.png News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out Gastroenterologist NP giving “Digestible Tips” on one of the most talked about topics among FOXG1 parents! https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677757-EJKV2GXTQUZTFUNA9K5P/IMG_5251.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - 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/v1/67ec879db06f3e63e35e9ed4/1743554677765-EKFLCDB9YGJ3YYY9G1TF/IMG_5446.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out FOXG1 neurologist from Colorado Children’s Hospital, Dr. Tim Benke, with FOXG1 mom to Finn and FOXG1 Research Foundation volunteer, Stevie Botti, both wearing Frankie the Fox gear! https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677774-W5XO7WIOM3T7IIJKQGC5/FRFConferencefamilies.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out FOXG1 families at the FOXG1 Syndrome Parents Conference 2022. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677785-NZNPZORFBFNVDWXGEUWL/Copy+of+Virtual+Sign+Up+Graphic+For+website-2.jpg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - 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/v1/67ec879db06f3e63e35e9ed4/1743554677792-CBQOS5P0QZ5HHYPPR0S4/IMG_0077.jpg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out The FOXG1 Research Foundation Executive Team https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677800-WUSX3YXBUDAJHP2AQKHM/Screen+Shot+2023-01-04+at+10.03.34+AM.png News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out Co-founder, Nicole Johnson presenting. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677808-2F3MRY07AK656DZOOAYO/60pYtyQo.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out FOXG1 parents to Clarissa from Texas. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677817-VZW0P2R14XBWRFTU8F85/jdv0eRAs.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out Co-founders Nasha Fitter and Nicole Johnson with Frankie the FOX! https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677826-RS1SDEFFB3EZOZA27VRG/CIZ-4-1o.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out Allyson Berent from FAST (cureangelman.org) presenting at the FOXG1 Parents Conference 2022. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677835-UW1EECDCG8EU6SZN3QI6/bVVB4fA8.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out In-person and virtual guests engaged in Q&A. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677843-D9TT769RUS0XCYWRLRR6/Ha33xvl7.jpeg News / Blog - FOXG1 Syndrome Science Symposium & Parents Conference Recap - Make it stand out Signs were everywhere: Our goal is to rescue the FOXG1 protein in children’s brains. https://www.foxg1research.org/news/2023/3/4/san-francisco-business-times-unlikely-drug-hunters-why-two-bay-area-mothers-spend-their-days-chasing-rare-disease-cures monthly 0.5 2025-11-21 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677857-YKD4YKE65MW5D8YDF696/Screen+Shot+2023-08-03+at+5.38.34+PM.jpg News / Blog - San Francisco Business Times: Unlikely Drug Hunters: How two mothers are finding hope in searching for their children’s cures - 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/v1/67ec879db06f3e63e35e9ed4/1743554677865-A7857CZPX3REAFPCAE2D/Screen+Shot+2023-03-04+at+1.59.54+PM.png News / Blog - San Francisco Business Times: Unlikely Drug Hunters: How two mothers are finding hope in searching for their children’s cures - Make it stand out Nasha Fitter and Kim Nye started rare disease foundations to cure their children’s diseases: SF Business Times https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677873-9GDTK9G2I217F0DNNPQ3/Screen+Shot+2023-03-04+at+9.58.06+AM.png News / Blog - San Francisco Business Times: Unlikely Drug Hunters: How two mothers are finding hope in searching for their children’s cures - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2023/1/11/2022-impact-report-pk24p monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677888-HSTNQAYCNICWNTUH5B3B/Impact+Report+%281640+%C3%97+624+px%29+%281640+%C3%97+524+px%29-2.png News / Blog - 2022 Impact Report - Make it stand out FOXG1 Research Foundation Impact Report 2022 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677896-4YE78187GRU635PRJSB2/thermom4.jpg News / Blog - 2022 Impact Report - Make it stand out FOXG1 Research Foundation Fundraising to-date https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677905-CFPJ0HEGMXN1LVEYNH1S/sourceofFunds.png News / Blog - 2022 Impact Report - Make it stand out FOXG1 Research Foundation 2022 Source of Funds https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677913-2ABFJ8MIOFRQFU2RCFE8/IMG_0077.jpg News / Blog - 2022 Impact Report - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2023/1/9/once-upon-a-gene-episode-163-how-far-weve-come-a-look-at-the-foxg1-research-and-family-conference-with-rare-mama-and-co-founder-nicole-johnson-chg67 monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677926-OH4X8AOT5BHV21C8RI9G/OnceUponAGenePodcast.jpeg News / Blog - ONCE UPON A GENE - EPISODE 163 - How Far We've Come - with Nicole Johnson - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2022/7/7/the-most-personalized-medicine-studying-your-own-childs-rare-condition-6g2na monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677944-8U8KDEAJ0CFGLK9LQRMN/findingfocus.jpeg News / Blog - The most personalized medicine: Studying your own child’s rare condition - Make it stand out Finding focus: Using stem-cell-derived models, Michael Boland’s team is testing two gene therapies for STXBP1 syndrome. Photograph by Akasha Rabut https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677955-GD531WZ5AQTTCLR4EYA9/floortime.jpeg News / Blog - The most personalized medicine: Studying your own child’s rare condition - Make it stand out Floor time: Cell biologist Boland plays on the floor with his son Lukas. Lukas, nearly 4 years old, doesn’t walk and only recently learned to crawl. Photograph by Akasha Rabut https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677963-60QE479LHXVMNKGGIUS4/Yunaexpressing.jpeg News / Blog - The most personalized medicine: Studying your own child’s rare condition - Make it stand out Expressing interest: Biologist Soo-Kyung Lee with her daughter Yuna and her son Joon. Yuna cannot walk or speak, but she likes stuffed animals and toys that light up or play music. Photograph by Eric Tronolone https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677972-EEMPD8XHSIT92C3HLUY3/Yuna+Playtime+.jpeg News / Blog - The most personalized medicine: Studying your own child’s rare condition - Make it stand out Play time: Lee helps Yuna peel stickers. Photograph by Eric Tronolone https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677981-ZOCXIHHCWKKUZ4YB8D6M/personalizedmedicine.jpeg News / Blog - The most personalized medicine: Studying your own child’s rare condition - Make it stand out Personalized medicine: Boland grows 3D organoid models of his son’s brain in a culture dish. Photograph by Akasha Rabut https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554677989-3FTWVTNCGL4Y0ALCVBIY/Lukas+-smallstep+.jpeg News / Blog - The most personalized medicine: Studying your own child’s rare condition - Make it stand out Small steps: Lukas doesn’t speak but is learning to express his needs through a communication device. Photograph by Akasha Rabut https://www.foxg1research.org/news/2022/5/27/global-genes-rare-leader-foxg1-research-foundation-co-founder-amp-executive-director-spt3s monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678023-1M0DOEABHGQBENLEJL5C/Screen+Shot+2022-05-27+at+8.42.58+PM.png News / Blog - Global Genes Rare Leader: FOXG1 Research Foundation Co-Founder & Executive Director - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2022/4/12/the-johnson-family-changing-the-world-right-here-in-port-washington monthly 0.5 2025-11-21 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678038-30OSPNK1SFQN3FJPLYDI/Screen+Shot+2022-04-12+at+9.25.20+AM.png News / Blog - The Johnson Family - Changing the World Right Here in Port Washington - 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/v1/67ec879db06f3e63e35e9ed4/1743554678048-02VLHCS40GSG89OCEQQQ/Screen+Shot+2022-04-12+at+10.32.32+AM.png News / Blog - The Johnson Family - Changing the World Right Here in Port Washington - 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/v1/67ec879db06f3e63e35e9ed4/1743554678056-348S1MBIO5RVFUCTDHIY/Screen+Shot+2022-04-12+at+10.38.20+AM.png News / Blog - The Johnson Family - Changing the World Right Here in Port Washington - 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/v1/67ec879db06f3e63e35e9ed4/1743554678068-VI49C8ANUWV1YBB361KK/Screen+Shot+2022-04-12+at+10.40.14+AM.png News / Blog - The Johnson Family - Changing the World Right Here in Port Washington - 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/v1/67ec879db06f3e63e35e9ed4/1743554678077-OV6L073EVQX440K7SZ2H/Screen+Shot+2022-04-12+at+10.40.52+AM.png News / Blog - The Johnson Family - Changing the World Right Here in Port Washington - 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/v1/67ec879db06f3e63e35e9ed4/1743554678084-ZPO6HPC45Q9ILBNGIF2K/Screen+Shot+2022-04-12+at+10.41.39+AM.png News / Blog - The Johnson Family - Changing the World Right Here in Port Washington - 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/v1/67ec879db06f3e63e35e9ed4/1743554678093-8LQJKRKNZ7WBEIPUEVTX/Screen+Shot+2022-04-12+at+10.42.24+AM.png News / Blog - The Johnson Family - Changing the World Right Here in Port Washington - 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/v1/67ec879db06f3e63e35e9ed4/1743554678102-6X6B8IJ5HHHY0BDAR4FS/Screen+Shot+2022-04-12+at+10.43.12+AM.png News / Blog - The Johnson Family - Changing the World Right Here in Port Washington - 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/v1/67ec879db06f3e63e35e9ed4/1743554678109-VB18AGETOI5OMCMBWRZE/Screen+Shot+2022-04-12+at+10.43.28+AM.png News / Blog - The Johnson Family - Changing the World Right Here in Port Washington - 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/v1/67ec879db06f3e63e35e9ed4/1743554678116-WB6U384YCM49JP1UJACY/Screen+Shot+2022-04-12+at+10.43.39+AM.png News / Blog - The Johnson Family - Changing the World Right Here in Port Washington - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2022/3/6/help-foxg1-ukraine-family-rebuild-n8erc monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678130-EB7FIU8YRH3O7IH34K8K/Help+FOXG1+Ukrainian+Family+Rebuild+Fund.png News / Blog - Help FOXG1 Ukrainian Family Rebuild! - Make it stand out UKRAINIAN FOXG1 FAMILY https://www.foxg1research.org/news/2021/12/22/a-new-years-message-from-our-ceo-a-look-ahead-into-2022-xler6 monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678142-CH8JGYXPV8G7G1ZCKIHF/Frankie2022.png News / Blog - A Look Ahead Into 2022! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.foxg1research.org/news/2021/12/27/2021-impact-report-8xnhe monthly 0.5 2025-02-20 https://www.foxg1research.org/news/2021/11/24/combined-brain-interviews-foxg1-research-foundation-co-founder-nicole-johnson-b5m7w monthly 0.5 2025-02-20 https://www.foxg1research.org/news/2021/9/15/rarebase-launches-a-neuroscience-drug-discovery-platform-collaborating-with-15-rare-disease-patient-organization-syg84 monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678165-LPAWOEN3TD3L28R9IGXP/Rarebase_drug_discovery.jpg News / Blog - Rarebase launches a neuroscience drug discovery platform collaborating with 15 rare disease patient organization - Make it stand out Mariah Gillaspie, the Founder and CEO of the Lightning and Love Foundation, reads a book to her daughter Emma who is affected by THAP12 epileptic encephalopathy. https://www.foxg1research.org/news/2021/8/6/once-upon-a-gene-episode-094-the-12-commandments-to-guide-you-when-youre-starting-a-rare-disease-patient-advocacy-group-with-nasha-fitter-and-mike-graglia-mhe5c monthly 0.5 2025-02-20 https://www.foxg1research.org/news/2021/7/19/boston-childrens-heather-olson-on-the-importance-of-the-foxg1-digital-natural-history-study-ebyxt monthly 0.5 2025-02-20 https://www.foxg1research.org/news/2021/6/25/dallas-morning-news-where-is-former-american-airline-ceo-tom-horton-raising-awareness-for-a-rare-genetic-condition-7j75m monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678187-X2XPL8EWQYMTZW7T6XC9/IMG_1950.jpeg News / Blog - Dallas Morning News: Where is Former American Airline CEO Tom Horton? Raising Awareness for a Rare Genetic Condition. - Make it stand out Horton jumped into the campaign to raise awareness for the rare FOXG1 syndrome after his infant granddaughter was diagnosed in 2020. https://www.foxg1research.org/news/https/globalgenesorg/2021/06/11/empowering-rare-disease-patients-with-their-own-health-records-czn3b monthly 0.5 2025-02-20 https://www.foxg1research.org/news/2021/5/27/foxg1-research-tv--4h24l monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678206-IB3RCS8VWN12Z6VF2DTG/Driving+research+to+Cure+FOXG1+syndrome.png News / Blog - Don't Miss the Latest on FOXG1 Research TV ! - Make it stand out What is FOXG1 syndrome? https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678212-PD5PE4CRZWOD44DMGEBH/Screen+Shot+2021-05-27+at+9.58.26+PM.png News / Blog - Don't Miss the Latest on FOXG1 Research TV ! - Make it stand out What is FOXG1 syndrome? Watch FOXG1 Research TV on YouTube and learn all about the research to cure FOXG1 syndrome that is underway. https://www.foxg1research.org/news/2021/4/23/how-the-ciitizen-foxg1-syndrome-platform-helps-patients-control-their-medical-records-and-drives-research-2y7k6 monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678228-EOW113WVRCWNTBJRPZWE/Screen%2BShot%2B2021-04-23%2Bat%2B11.48.25%2BAM.jpg News / Blog - How the Ciitizen FOXG1 Platform Drives Research and Helps Parents Manage Medical Care https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678235-24F3E2S10M5IZORBQQE1/Screen+Shot+2021-04-23+at+1.09.55+PM.png News / Blog - How the Ciitizen FOXG1 Platform Drives Research and Helps Parents Manage Medical Care https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678242-L9KTFBC8V6S641M2WYIU/Screen+Shot+2021-04-23+at+1.12.42+PM.png News / Blog - How the Ciitizen FOXG1 Platform Drives Research and Helps Parents Manage Medical Care https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678250-AH8Z9JX2PSCZNX1DOV5V/Screen+Shot+2021-04-23+at+1.15.52+PM.png News / Blog - How the Ciitizen FOXG1 Platform Drives Research and Helps Parents Manage Medical Care https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678257-DCTUOPSG7EP19PWSE7IC/Screen+Shot+2021-04-23+at+1.20.13+PM.png News / Blog - How the Ciitizen FOXG1 Platform Drives Research and Helps Parents Manage Medical Care https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678265-7DFSSW9SSQKLTQJTP4A9/Screen+Shot+2021-04-23+at+1.22.47+PM.png News / Blog - How the Ciitizen FOXG1 Platform Drives Research and Helps Parents Manage Medical Care https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678272-JKK81OPXHB0CEE1TVXTQ/Screen%2BShot%2B2021-04-23%2Bat%2B1.31.04%2BPM.jpg News / Blog - How the Ciitizen FOXG1 Platform Drives Research and Helps Parents Manage Medical Care https://www.foxg1research.org/news/2021/4/10/a-daughters-rare-disease-brings-mother-father-researchers-to-buffalo-for-answers-skktb monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678284-NLO347TJZBLB8LQUH70F/606e22b38f79f.image.jpg News / Blog - A Daughter's Rare Disease Brings Mother-Father Researchers to Buffalo for Answers Soo-Kyung Lee, Empire Innovation Professor of Biology at the University at Buffalo, has been driven to focus greater attention on FOXG1 syndrome since her daughter, Yuna, was diagnosed with the neurological condition almost nine years ago. Douglas Levere/University at Buffalo https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678292-VRBJ784SQEFVWO3ZW6IL/606e235f8b5ff.image.jpg News / Blog - A Daughter's Rare Disease Brings Mother-Father Researchers to Buffalo for Answers Jae Lee, above, and his wife, Soo-Kyung Lee, natives of South Korea, came to Buffalo from Portland, Oregon two years ago with aims to create a center of excellence in FOXG1 research. Douglas Levere/University at Buffalo https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678299-8FJBN8YVSWS0L3HZOBST/606e23fcc6585.image.jpg News / Blog - A Daughter's Rare Disease Brings Mother-Father Researchers to Buffalo for Answers FOXG1 research could have implications for several neurological diseases, said Soo-Kyung Lee, including autism, Alzheimer’s, epilepsy, and schizophrenia. Douglas Levere/University at Buffalo https://www.foxg1research.org/news/2021/4/1/waitlist-is-open-for-next-nhs-cohort-4c5j9 monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678312-PGM21O3NRT7OLIKT73UK/NHSWaitlistFB.png News / Blog - Waitlist is Open for Next NHS Cohort https://www.foxg1research.org/news/2021/3/18/surveys-for-all-foxg1-parents-f4mj6 monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678324-GSSNVYG1I7SCFKCLAJE3/Surveys.png News / Blog - Incredibly Important Surveys for all FOXG1 parents to take! https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678333-JDR36AWB0HG59ILFXHXW/Screen%2BShot%2B2021-03-17%2Bat%2B11.40.04%2BAM.jpg News / Blog - Incredibly Important Surveys for all FOXG1 parents to take! https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678342-M6TWMXWQA5C4WUSSGG9G/Screen%2BShot%2B2021-03-18%2Bat%2B8.39.28%2BAM.jpg News / Blog - Incredibly Important Surveys for all FOXG1 parents to take! https://www.foxg1research.org/news/2021/2/17/rare-disease-day-2021-the-faces-of-foxg1-syndrome-hf7ly monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678355-U4OMIAH2DTVW7FSAEB01/IMG_5862.jpeg News / Blog - Rare Disease Day 2021 : FOXG1 Syndrome https://www.foxg1research.org/news/2021/2/8/introducing-foxg1-research-foundation-australia-mec45 monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678371-ADQ08JFV1FSQGGM6F0A1/Screen%2BShot%2B2021-02-08%2Bat%2B10.44.21%2BPM.jpg News / Blog - Introducing - FOXG1 Research Foundation Australia! https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678378-ZMPBPUNW5WC0694K9E4N/SteveandMina.jpg News / Blog - Introducing - FOXG1 Research Foundation Australia! Steve HIlle with https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678388-T6V3IYO6L9J4VP6V0O53/Steve.jpg News / Blog - Introducing - FOXG1 Research Foundation Australia! https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678396-1EUX3LA29LUL2WBL7GSY/Ange.jpg News / Blog - Introducing - FOXG1 Research Foundation Australia! https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678404-8XQR31N0O72U2JPD4NV5/Caroline%2BPhoto.jpg News / Blog - Introducing - FOXG1 Research Foundation Australia! https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678414-NT5JRAZCPB3QNI69WZJ4/photo+Liz+B%26W%282%29.jpg News / Blog - Introducing - FOXG1 Research Foundation Australia! https://www.foxg1research.org/news/2021/2/10/inside-research-with-nasha-drug-screening-for-foxg1-9tzfm monthly 0.5 2025-02-20 https://www.foxg1research.org/news/2020/11/24/what-does-this-new-digital-natural-history-study-mean-for-me-c79hk monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554678432-X8CYGLI4BK29YNOI9BXW/Screen+Shot+2020-11-24+at+7.20.11+PM.png News / Blog - What Does this New Digital Natural History Study Mean for Me? 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January Newsletter: Big Things in 2019 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679187-V6155L0MB5Q35SHIU1OV/Screen+Shot+2019-01-31+at+10.28.20+AM.png News / Blog - January Newsletter: Big Things in 2019 www.foxg1research.org https://www.foxg1research.org/news/2018/11/26/the-first-foxg1-scientists-symposium-a-recap-gck4m monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679202-73B21BQMIIP1JFTYAYFL/Screen+Shot+2018-11-14+at+11.41.14+AM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679209-1B55WVCXH4MRDQWBP2IE/Screen+Shot+2018-11-14+at+11.41.25+AM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679216-QB428MVMR2SGVX02KWIP/IMG_9218.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. John Mason PhD Univ. of Edinburgh https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679223-FUTRVXUYVA5BOAVC70KY/Screen+Shot+2018-11-14+at+11.34.10+AM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679232-KFWFZVKVF4UTV1264Y8X/Screen+Shot+2018-11-14+at+3.05.00+PM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679239-8IS4NA0KSWI5ZIKVR8KP/Screen+Shot+2018-11-14+at+3.04.08+PM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. Dr. Soo Kyung-Lee OHSU https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679246-O1DZF93H79UXZXOOF918/Screen+Shot+2018-11-14+at+3.08.14+PM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679255-3RW7PRR0ESKSRRJLH51C/Screen+Shot+2018-11-14+at+3.14.40+PM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. Dr. Guangping Gao and Dr. Dominc Gessler https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679263-SHU8R1Y29S72ODSC76Q4/IMG_9294.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. Dr. Dominic Gessler - Univ. of Massachusettes https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679270-VTCPJG6GLWLBJRDGC1CN/Screen+Shot+2018-11-14+at+3.27.38+PM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679279-3FEWVFN6IAJRRA19P3X8/Screen+Shot+2018-11-14+at+3.28.27+PM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. Dr. Antonello Mallamaci - PhD SISSA Italy https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679286-8Q3YISCNYFTK8EEJ8UCZ/IMG_9274.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. Dr. Flora Vaccarino - MD Yale School fo Medicine https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679295-N80T5FXURYUUM8PONTGY/IMG_9270.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679303-942IQMFT7OXC28MIY515/IMG_9267.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. Dr Fabien Delerue -PhD Macquaire Univ. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679312-BB5D3B0E4DUHJO3COTVY/IMG_9279.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. De Tanja Vogel - PhD Univ. of Frieberg https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679324-YUJZAHJARJIZ7THP2VJ6/IMG_9275.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. Dr. Alessandra Renieri - MD, PhD Univ. Sienna, Italy https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679332-ICRF1JXA612KIXKBT40A/IMG_9236.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679340-1E3ZRJ6U66CUHTN7Z53I/IMG_9230.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. Dr. Corrine Houart - PhD King’s College London https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679347-FI5DHFPSG83JRGSIEWSB/IMG_9265.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. Dr. Goichi Miyoshi - PhD Tokyo Women’s Medical Univ. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679355-VI4PDHV1M18EM2WTSLE7/IMG_9290.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. Dr. Roberta Cilio - MD, PhD Univ. of Louvain https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679363-FJDRWPFPR6SRA8X381IB/Screen+Shot+2018-11-14+at+10.57.52+AM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. Zach Horn, Rockefeller University Hourinaz Behesti , PhD Developmental Neurobiologist, Rockefeller University, Nasha Fitter, Co-Founder FOXG1 Research Foundation, Alyson Mourti UCSD Associate Professor of Cellular & Molecular Medicine, https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679372-GK806NP0VL7DK9QZ9IWZ/Screen+Shot+2018-11-14+at+10.57.24+AM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. FOXG1 Research Worldwide Team and Scientists https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679379-5JIJZZ1NQZFQMOA0MAWX/Screen+Shot+2018-11-14+at+10.52.48+AM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. We held a special Parents and Scientists meeting / Q&A https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679388-73ZHN4HZ63AHAYZJMU7R/Screen+Shot+2018-11-14+at+10.54.03+AM.png News / Blog - The First FOXG1 Scientists Symposium - A Recap. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679395-OWK2WJKCYQ7LKRTYW1RC/IMG_9071.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679402-CCDKKUJMUQSHIKSWM62V/IMG_9093.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. Emma & Ali Wells! https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679411-EIJYHRF10TU3SZGHCULE/IMG_9176.jpg News / Blog - The First FOXG1 Scientists Symposium - A Recap. 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FOXG1 Research Foundation Co-founders Nasha Fitter and Nicole Johnson https://www.foxg1research.org/news/2018/12/14/for-yuna-ohsu-scientist-unveils-origins-of-daughters-rare-condition-study-findings-could-lead-to-new-treatment-options-for-foxg1-syndrome-jb9b2 monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679442-4N8K4MQW6QVARLE6II1H/image-asset.jpeg News / Blog - For Yuna: OHSU Scientist Unveils Origins Of Daughter’s Rare Condition: Study Findings Could Lead To New Treatment Options For FOXG1 Syndrome https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679449-KN86X9PZ754IZ69XR5GO/SooYuna.jpg News / Blog - For Yuna: OHSU Scientist Unveils Origins Of Daughter’s Rare Condition: Study Findings Could Lead To New Treatment Options For FOXG1 Syndrome Soo-Kyung Lee, Ph.D., with her daughter Yuna. 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I am a more optimistic scientist because of her.” (OHSU/Kristyna Wentz-Graff) https://www.foxg1research.org/news/2019/1/4/wfan-public-affairs-discussion-with-foxg1-research-co-founder-nicole-zeitzer-johnson-68k2y monthly 0.5 2025-02-20 https://www.foxg1research.org/news/2019/1/3/infinitesimal-odds-a-scientist-finds-her-childs-rare-illness-stems-from-the-gene-she-studies-video-a5jey monthly 0.5 2025-02-20 https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679475-3LP6QYYFYL54W7E4HU7D/00YUNA2-superJumbo.jpg News / Blog - Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video Soo-Kyung and Yuna on a FaceTime call with Soo-Kyung’s parents in Korea.CreditRuth Fremson/The New York Times https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679483-GMAKJJZKPIBC5FMAMA9X/merlin_130882022_0adc7810-a2dd-4396-8c66-3b4b53f56174-superJumbo.jpg News / Blog - Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video Soo-Kyung, left, and Jae, right, work next door to each other; together they are researching FOXG1 syndrome, the rare disorder Yuna has.CreditRuth Fremson/The New York Times https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679493-KZS315HS57GSPDAEWAAG/image-asset.jpeg News / Blog - Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video Yuna and her mother in a family photo. Born in Texas during a rare snowfall, her name, Yuna, means “snow girl” in a Korean dialect. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679505-78TFPS4AYT8AWUYHUQB9/image-asset.jpeg News / Blog - Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video Left, Soo-Kyung watching a postdoctoral fellow with mouse brains in her lab at OHSU. Right, examining chicken embryos. She has begun aiming her research at understanding Yuna’s brain disorder.CreditRuth Fremson/The New York Times https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679513-N7GPIMBBTUUIUE9D4FYZ/00YUNA5-superJumbo.jpg News / Blog - Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video Yuna exploring her mother’s closet after her bath. Her mother, Soo-Kyung, began sleeping on the mattress after she collapsed from the stress of caring for Yuna; sleeping in the closet helps Soo-Kyung rest without noise or distraction.CreditRuth Fremson/The New York Times https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679520-17NI3MXWQ2YIH7QGIGE1/image-asset.jpeg News / Blog - Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video Music seems to calm Yuna, so her father Jae often plays guitar in the evenings. Yuna’s brother, Joon, 5, helps as he can.CreditRuth Fremson/The New York Times https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679528-XOCNFUGLW1KNAMCKO0Q3/merlin_124539026_982fdc6c-8756-4f63-bd8a-a9b1726b2a30-superJumbo.jpg News / Blog - Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video Soo-Kyung’s peripheral vision being tested at an occupational therapy session. She suffered a collapse in 2016 from the stress of juggling her scientific career while caring for Yuna, and dealt with the after-effects of vertigo.CreditRuth Fremson/The New York Times https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679537-3U3PQXL801GXVKKWH25V/merlin_125343428_a52580e1-8ec2-4bc2-889d-4bc5ba553015-superJumbo.jpg News / Blog - Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video Yuna Lee with her speech therapist, Diana Deaibes at Shriners Hospital for Children in Portland, Ore. nearly a year ago. A computer program was used to teach her to communicate with her eyes by staring at something she likes onscreen. The hope is for her to eventually direct her gaze to show that she wants food or a toy.CreditRuth Fremson/The New York Times https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679545-TKLUPEMHW608Z22R0RH3/image-asset.jpeg News / Blog - Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video Listening to a teacher read.CreditRuth Fremson/The New York Times https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679555-LT6MEEF9PITGK3DMRZBJ/image-asset.jpeg News / Blog - Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video Therapists working with Yuna are uncertain whether she is cognitively able to understand that the label contains her name.CreditRuth Fremson/The New York Times https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/1743554679564-SSPOJCQSBJNSYCGFU746/image-asset.jpeg News / Blog - Infinitesimal Odds: A 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The text on the screen identifies her as Nasha Fitter, FOX61 Research Foundation's cofounder and CEO. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/a2ac0460-5959-4995-9ed9-9a3729a791c5/FullSizeRender.jpeg Our Story A group of people at the University at Buffalo FOXG1 Research Center ribbon-cutting event at the University of Buffalo, standing in front of a digital screen displaying the center's logo, with balloons on the left side. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/901395f4-b3e4-4882-aefd-e7412e0d1812/IMG_0077.jpg Our Story Group of nine people standing in front of a FOXG1 Foundation banner at an event, smiling and posing for the photo. https://images.squarespace-cdn.com/content/v1/67ec879db06f3e63e35e9ed4/f5b50183-0db7-4bf1-bee0-bade45753fa1/IMG_3490.jpeg Our Story Five women sitting around a table in a cafe or restaurant, engaged in conversation and reading. 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