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Funding Clinics to Advance Knowledge of Myhre Syndrome - Make it stand out Alec has been visiting the clinic regularly since his diagnosis. https://www.myhresyndrome.org/news/research-team monthly 0.5 2022-11-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/7a9bf839-e5a2-4459-81f0-ad3b49ea924f/Research+team+mgh.jpg News - Research Team Retreat - Representing Myhre - Make it stand out From left Joseph Lawton, BS, CRA, Eleanor R. 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Rare Disorder & Syndrome Clinics – “Everything (well, almost) you wanted to know, and have been asking” https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1631073037607-42UBUGOSEBA7EVI9TOI3/doctor+hospital.jpg News - Rare Disorder & Syndrome Clinics – “Everything (well, almost) you wanted to know, and have been asking” - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/news/2021/8/12/everything-about-genetics-is-so-fascinating-and-the-passion-for-the-myhre-community-is-contagious monthly 0.5 2022-02-26 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1628803929783-2K61162BTGXGYPF1M3Y8/Eleanor.jpg News - “Everything about genetics is so fascinating and the passion for the Myhre community is contagious” - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/news/2021/7/18/the-first-msf-virtual-conference-what-a-weekend monthly 0.5 2021-07-18 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1626640095250-T2UWEQFH2ZFO5TYUUZSE/Myhre_VC+2021_Banner+Conf+Host.jpg News - 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Patti's Story Pattie and Duke https://www.myhresyndrome.org/news/2020/7/11/myhre-in-the-midst-of-covid-19 monthly 0.5 2021-02-18 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1594475921214-2VY5NDHJL4PAJ34YI2Y3/dog+walk.jpg News - Myhre in the Midst of COVID-19 Edith and Tater enjoy the outside. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1594477206107-S0UJIVSAJXBZ3QJB8QSX/pic+of+cabinets+cleaning.jpg News - Myhre in the Midst of COVID-19 Helping out at home. Time to get organized, mom! https://www.myhresyndrome.org/news/2020/2/10/a-time-of-transition monthly 0.5 2021-02-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1581348338382-JODDZE6OL0EGKSJRSDYG/edith.png News - A Time of Transition Edith https://www.myhresyndrome.org/news/2019/11/26/this-is-me-by-katie-white monthly 0.5 2019-11-26 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1574772125523-BDF7P1HK47PAML0CB5FD/IMG_4501%5B6740%5D.jpg News - This is Me. Katie with her family. https://www.myhresyndrome.org/news/2019/11/11/marathoning-for-myhre-syndrome-foundation-meet-alex-and-lee monthly 0.5 2021-02-28 https://www.myhresyndrome.org/news/2019/9/16/from-the-laboratory-to-the-library-rare-disease-research monthly 0.5 2021-02-28 https://www.myhresyndrome.org/news/2019/6/28/i-will-be-strong monthly 0.5 2021-02-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1565541139231-FC5Y7VC284MA28AFJTZ7/65287062_328818991371632_8404833729314291712_n.jpg News - I Will Be Strong Elliot 15yrs (Montreal, Canada) https://www.myhresyndrome.org/news/tag/rare+disease monthly 0.5 https://www.myhresyndrome.org/news/tag/Fundraiser monthly 0.5 https://www.myhresyndrome.org/news/tag/myhre+syndrome monthly 0.5 https://www.myhresyndrome.org/news/tag/research monthly 0.5 https://www.myhresyndrome.org/news/tag/transition monthly 0.5 https://www.myhresyndrome.org/events daily 0.75 2026-03-30 https://www.myhresyndrome.org/events/2024/5/26/myhre-research-webinars-ggp8t-prarn monthly 0.5 2026-02-20 https://www.myhresyndrome.org/events/2024/5/26/myhre-research-webinars-ggp8t monthly 0.5 2026-03-20 https://www.myhresyndrome.org/events/2023/1/20/coffee-hour2-nkzpa-j3rb5 monthly 0.5 2026-01-14 https://www.myhresyndrome.org/events/2025/10/16/myhre-smad4-forum-neo-cysteine-molecular-glues-for-targeting-mutated-smad4-protein-l47ny monthly 0.5 2025-09-02 https://www.myhresyndrome.org/events/2025/10/16/myhre-smad4-forum-neo-cysteine-molecular-glues-for-targeting-mutated-smad4-protein monthly 0.5 2025-09-02 https://www.myhresyndrome.org/events/2023/1/20/coffee-hour2-nkzpa monthly 0.5 2025-05-15 https://www.myhresyndrome.org/events/2023/1/20/coffee-hour-asn42 monthly 0.5 2025-05-15 https://www.myhresyndrome.org/events/2024/5/26/myhre-research-webinars monthly 0.5 2026-01-02 https://www.myhresyndrome.org/events/2024/7/26/myhre-family-conference-2024 monthly 0.5 2024-05-16 https://www.myhresyndrome.org/events/2023/10/14/msf-international-virtual-conference monthly 0.5 2023-10-04 https://www.myhresyndrome.org/events/2023/1/20/coffee-hour2 monthly 0.5 2024-12-30 https://www.myhresyndrome.org/events/2023/1/20/coffee-hour monthly 0.5 2024-12-22 https://www.myhresyndrome.org/events/2022/3/22/summer-seminars monthly 0.5 2022-08-05 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/4d4b37cd-fac7-4b69-9b1c-ca92e2c18c00/Supporters+Badge.png Events - Summer Seminars 2022 - 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/v1/5c7804b5797f7410f57b25ea/155c1db9-45cc-4433-a1af-91bc58686911/Facebook+Summer+Seminar+Post.png Events - Summer Seminars 2022 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/events/2021/7/31/move-for-myhre monthly 0.5 2021-08-11 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1627268564054-2K2U1C5HTKVNKTHTARYF/Move+for+Myhre_2021_banner+2.png Events - Move for Myhre - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/events/2021/2/17/dszn3vb6eg4et8kqery5jdd6ffyb9o monthly 0.5 2021-07-31 https://www.myhresyndrome.org/pab-research-summary daily 0.75 2021-06-14 https://www.myhresyndrome.org/pab-research-summary/2021/6/14/research-summary-constipation monthly 0.5 2021-06-14 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623688847414-NSTJLLALWHWI5KDM10O7/Dr.+Sofia+Douzgou+Houge.jpg PAB Research Summary - Research Summary: Constipation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/pab-research-summary/2021/5/11/what-was-the-first-report-about-myhre-syndrome monthly 0.5 2021-06-02 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1620754966988-QHWXFU5LMSHB5LCBFWUI/Dr+Matt.jpg PAB Research Summary - What was the first report about Myhre Syndrome? - 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/v1/5c7804b5797f7410f57b25ea/1620754819884-K62K2WF3FE7E98YEXIB9/Dr+Lin.jpg PAB Research Summary - What was the first report about Myhre Syndrome? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/pab-research-summary/2021/5/11/the-people-behind-the-research-losartan monthly 0.5 2021-05-11 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1620753944795-DPF4XTKXFBPPN1PR0D8J/Cappuccio.jpg PAB Research Summary - The people behind the research: Losartan - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/developmental-issues daily 0.75 2022-09-23 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887309188-TNBKCVG5L6DKUEYK6NAZ/image-asset.png Developmental & Behavioral Issues in Myhre Syndrome - Brain Health Amy Morgan, Ph.D, ABPP, discusses learning and behavior in Myhre Syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887309188-TNBKCVG5L6DKUEYK6NAZ/image-asset.png Developmental & Behavioral Issues in Myhre Syndrome - Brain Health Amy Morgan, Ph.D, ABPP, discusses learning and behavior in Myhre Syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887165908-H2EZMBFSRACQJTGQHT10/image-asset.png Developmental & Behavioral Issues in Myhre Syndrome - Myhre Syndrome Psychiatry Robin Thom, MD, discusses psychiatric conditions in individuals with autism spectrum disorder and other developmental disabilities. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663516309256-VF8WC6SL2DHS4BYIBFDO/image-asset.octet-stream Developmental & Behavioral Issues in Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887280007-WVFN68Z5SWHWW5I9T69L/image-asset.png Developmental & Behavioral Issues in Myhre Syndrome - Neuropsychology Cole Hague, PhD - talks about the pediatric clinical neuropsychologist role and the role of neuropsychologic testing. https://www.myhresyndrome.org/video-gallery-1 daily 0.75 2022-09-23 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889749601-JIIZN2XB0WWPI356EC4R/image-asset.png Introduction to Myhre Syndrome Videos - Clinical Care Guidelines https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889749601-JIIZN2XB0WWPI356EC4R/image-asset.png Introduction to Myhre Syndrome Videos - Clinical Care Guidelines https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891901574-RG3Q7X1MPTZD092UIPNM/image-asset.png Introduction to Myhre Syndrome Videos - What's next after a diagnosis - Angela Lin https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891863372-JYY7N6HTTHTTP3LB8FXQ/image-asset.jpg Introduction to Myhre Syndrome Videos - Your Child (or You) Has Myhre Syndrome - Now What? Dr. Angela Lin, MD, talks about next steps after receiving a Myhre Syndrome diagnosis. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663423773677-YARMKTQIE7D8SPY43XF8/image-asset.jpeg Introduction to Myhre Syndrome Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891553895-CN7GO4I2KXO1VGJEJ1BW/image-asset.png Introduction to Myhre Syndrome Videos - Myhre Clinic Update - Angela Lin https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891570150-UBM5TWN7DAUSY03TVI9L/image-asset.png Introduction to Myhre Syndrome Videos - Genetics: Update on the MGH Myhre Syndrome Clinic by Dr. Angela Lin https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889771371-NS0S9L8QNGSNO71WH2X7/image-asset.png Introduction to Myhre Syndrome Videos - Adults with Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891389134-2S9O7NSLZY5B1WPM9V8R/image-asset.png Introduction to Myhre Syndrome Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663423773657-435TXY1TXGXRSLSZ2520/image-asset.octet-stream Introduction to Myhre Syndrome Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891669409-G1ICQ69340U8HSRPADMW/image-asset.png Introduction to Myhre Syndrome Videos - Mitigating the Impact of Chronic Caregiving Stress and Finding Space for You https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663885916294-LSI7VHWV38SHN2DFXQRC/Creating+a+personal+care+team+%288%29.png Introduction to Myhre Syndrome Videos - Understanding SMAD4 Dr. Lois Starr, MD, explains the genetics behind Myhre Syndrome. https://www.myhresyndrome.org/physica daily 0.75 2025-09-09 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887352753-D3EYMF2G3BCHH5WM2IYC/image-asset.png Physical Complications of Myhre Syndrome - Brain and Spine Imaging - Eleanor Scimone - https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887352753-D3EYMF2G3BCHH5WM2IYC/image-asset.png Physical Complications of Myhre Syndrome - Brain and Spine Imaging - Eleanor Scimone - https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892332160-BNGEBZBX8647T94TBJ78/image-asset.png Physical Complications of Myhre Syndrome - Pulmonology: What We Know about Breathing and the Lungs in Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889063689-4BR9G2LY4YE696UMJ8Y4/image-asset.png Physical Complications of Myhre Syndrome - Cancer in Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892432501-M9BM2N9T7FIW1BGPHH22/image-asset.png Physical Complications of Myhre Syndrome - Cardiology Dr. Mark Lindsay, MD, PHD, discusses cardiological complications with Myhre Syndorme. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892545828-7K7AH2ZGBYK33RQWRCXP/image-asset.png Physical Complications of Myhre Syndrome - Cardiology: The Heart of Myhre Syndrome by Dr. Mark Lindsay https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889293211-E826GDI4FPUTFOH5NMF8/image-asset.png Physical Complications of Myhre Syndrome - Cardiology: Clinical and Bench Research Dr. Mark Lindsay, MD, discusses clinical and bench cardiology research. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889319057-2OSL8DR07V98ASVMQJAE/image-asset.png Physical Complications of Myhre Syndrome - Constipation Issues Pediatric gastroenterologist Sarah Kadzielski, MD discusses issues related to GI and constipation. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892034350-G28XS7X8SHHSWULRHVOQ/image-asset.png Physical Complications of Myhre Syndrome - Ear, Nose & Throat Issues Michael Cohen MD, talks about the potential symptoms for ears, nose, and throat for patients with Myhre syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892168045-BBP4NU17SEPLWEA26SLA/image-asset.png Physical Complications of Myhre Syndrome - ENT Problems in Myhre Syndrome by Michael Cohen https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889847277-REDTYORGFLG41JX30MT7/image-asset.png Physical Complications of Myhre Syndrome - Endocrine Issues Lynne Levitsky, MD, discusses endocrine issues in Myhre syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889869418-TJPXZ7B9OXFJW9L5DD24/image-asset.png Physical Complications of Myhre Syndrome - GI: Feeding and Gastrointestinal Problems Dr. Sofia Douzgou Houge, MD, discusses feeding and gastrointestinal issues. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889826790-LNJZP9NRKRWZWVOECGIQ/image-asset.png Physical Complications of Myhre Syndrome - Ear Problems & Hearing Loss Dr. Michael Cohen, MD, discusses the exam and treatment of ear problems, hearing loss, and airway problems. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889921721-FMGB2LL53YTMKTRU2L5V/image-asset.png Physical Complications of Myhre Syndrome - Immune Phenotype of Myhre Syndrome Pamela A. Guerrerio, MD, PHD, discusses the immune phenotype of Myhre Syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663893215560-QTVCD8IK361P2QW05ZBZ/image-asset.png Physical Complications of Myhre Syndrome - The Immune System & Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889948981-EXQ1A7VR3B78AY0Z728K/image-asset.png Physical Complications of Myhre Syndrome - Lung & Sleep Related Issues Bernard Kinane, MD, discusses lung and sleep related issues with Myhre https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889970158-UQXYDFBM60FN276SHKXS/image-asset.png Physical Complications of Myhre Syndrome - Musculoskeleton and Joint Issues Dr Brunett-Pierri, MD, discusses musculoskeleton and joint issues in Myhre Syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890011610-QBBWVDTFNMYH7VLER7FP/image-asset.png Physical Complications of Myhre Syndrome - Nephrology & Hypertension, Weizhen Tan https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890038626-KIM14YM2QWQBPSBQ30Y7/image-asset.png Physical Complications of Myhre Syndrome - Ophthalmology Gena Heidary, MD discuss neuro-ophthalmology - vision and examination of the eye. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890064054-Y67LE7KPC7ZJET2H7TV0/image-asset.png Physical Complications of Myhre Syndrome - Physical Therapy Brigette Jason talks you through the role of physical therapy, the common impairments, and interventions. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892680819-AIO5OV2UXUF5QJTSOO7W/image-asset.png Physical Complications of Myhre Syndrome - Let's Keep Moving: The Important Role of Fitness and Physical Therapy in Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890099035-5LA1QCLBAMD9BE9ZKLQ9/image-asset.png Physical Complications of Myhre Syndrome - Pulmonology Insights Dr. T. Bernard Kinane discusses pulmonology and what we know from other syndromes. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890117848-TF1YTU01Q2DKD9LRONTH/image-asset.png Physical Complications of Myhre Syndrome - Skin, Hair, and Nail Issues Evelyn Lilly, MD, talks us through how the skin, hair and nails are affected by Myhre syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663513149094-VN4WJDVU8HFH03496CKX/image-asset.jpeg Physical Complications of Myhre Syndrome - Brain and Spine Imaging Eleanor Scimone, BS, CRA, shares the findings from the brain and spine imaging in the patients seen at the MGH Myhre Syndrome Clinic. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890137805-QLZH25G8OZQRAHIE92F1/image-asset.png Physical Complications of Myhre Syndrome - Stiff Skin and Joints Dr. Nicola Brunetti-Pierri, MD, discusses skin and joint issues. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663513149074-C6MCW070UOJO6E31SYS9/image-asset.octet-stream Physical Complications of Myhre Syndrome https://www.myhresyndrome.org/research-videos daily 0.75 2022-09-23 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887010836-5SZ2XIOJE6H6H7M0EY3M/image-asset.png Research Videos - Jackie Lee - Myhre Syndrome Foundation Research Update https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887010836-5SZ2XIOJE6H6H7M0EY3M/image-asset.png Research Videos - Jackie Lee - Myhre Syndrome Foundation Research Update https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663637589202-M0D655UTPVNCL3OFIAF1/image-asset.octet-stream Research Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663886769433-B54IGQLXJ1R8YUIAYWXB/image-asset.png Research Videos - Research - Creating A Mouse Model https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892762798-PML16BW5CBWX59ROQQ4K/image-asset.png Research Videos - Research about Myhre Syndrome, Asks Questions, Partners with Patients by Dr. Valerie Cormier Daire https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663886856200-RKNUQCUVJFOBETXBU557/image-asset.png Research Videos - CoRDS Registry https://www.myhresyndrome.org/community-videos daily 0.75 2022-09-22 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887049579-35MVODZ1T2VEKPDJTTCH/image-asset.png Community Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887049579-35MVODZ1T2VEKPDJTTCH/image-asset.png Community Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887071767-CJUYCKDGODWR2PNMUB1L/image-asset.png Community Videos - Myhre & Me - Personal Experience: Holli Cranfill's Story https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887092375-GKB5HY5MJJQKYXFPTC6U/image-asset.png Community Videos - Myhre & Me - Parent Experience - Kate Wears https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887110844-JMOXO972MA73L0YIDKYW/image-asset.png Community Videos - Myhre, My Sister & Me Mary Young speaks about her sister who has Myhre Syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663633637733-LFWD9YO8A1Y58X8KX8B4/image-asset.octet-stream Community Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887133554-G5Z200401M2TXZD8T7W2/image-asset.png Community Videos - April and Alec demonstrate ASL https://www.myhresyndrome.org/about-msf daily 0.75 2026-04-02 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/04ce5a5d-57b0-4116-bd0e-91ffbd1f9f90/kathy+and+anna.jpg The MSF Board & Advisors Kathy Young - Co-founder and President https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/60827a30-dcba-4d74-9baf-d8ba763b79bd/Zac+Burns+Headshot.jpg The MSF Board & Advisors Zac Burns - Vice President https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/aa37cb14-57f2-48fc-a31e-7d0189f7fddd/Jessica+Simkins.JPG The MSF Board & Advisors Jessica Simkins - Secretary https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/f60af076-a631-4cae-91c0-656236a832ce/2L6A0952.jpg The MSF Board & Advisors - Make it stand out Michelle Smith - Treasurer https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1621361517288-5TZ1DJHWH0D8P6Z08VZ8/Clark_Don-2.jpg The MSF Board & Advisors - Make it stand out Don Clark - Director https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1746554444061-FNPEOEPUL4ZTONTU9O9C/Christiana+2.jpg The MSF Board & Advisors Christiana Thomas - Executive Director https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/934df7e2-15ae-4c31-bb29-a5ad71102b85/Mary+Young+and+Sister+Anna.jpg The MSF Board & Advisors - Make it stand out Mary Young - Director https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/5ca793e8-fcf9-4f23-b4c2-b0f50efb4c90/Armelle+Pindon_edited_edited+%281%29.jpg The MSF Board & Advisors Armelle Pindon, PhD - Chief Scientific Officer https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/cdf4c992-0d76-4c3a-abf5-05576f8a6236/Susan+Murphy.jpg The MSF Board & Advisors Susan Murphy - Director https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1664249955668-91BAJ27N5O9BTY4RSDWF/Headshot%2BKate%2BWears%2B.jpg The MSF Board & Advisors - Make it stand out Kate Wears - Event Coordinator https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/4a695393-0229-459b-988e-e36c0b0d11cc/IMG_3108.jpg The MSF Board & Advisors - Make it stand out Betsy Cox - Director https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1565222607309-473CRXQF5S53BDQKGFIM/lin.jpg The MSF Board & Advisors - Dr. Angela E. Lin - Geneticist https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1565222409487-1AH4UM1Q1ZLJLJNZOKWE/lindsay.jpg The MSF Board & Advisors - Dr. Mark E. Lindsay - Cardiologist https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1577721118765-ONUETHKW5DTBJ9DY6ZS4/Pr-Valerie-Cormier-Daire.jpg The MSF Board & Advisors - Pr. Valerie Cormier-Daire - Geneticist https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623689451237-9NBZ19NHGTZ411TQUTKO/nicola-brunetti-pierri-4.jpg The MSF Board & Advisors - Dr. Nicola Brunetti-Pierri - Geneticist https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1755991711825-B7YLP3SAP7F8SB9UMIJS/Dr%2BShaine%2BMorris.jpg The MSF Board & Advisors - Dr. Shaine Morris - Pediatric Cardiologist https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623689497340-N6T3STE7S0GFVZI39ADG/Bert+Callewaert.jpg The MSF Board & Advisors - Dr. Bert Callewaert - Geneticist https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1756833742662-9G866H713ZMX7C6U3ME0/neptune-enid-1518051416.jpg The MSF Board & Advisors - Dr. Enid Neptune - Pulmonologist https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1732129295889-YYHNZ5RYVRQRQ4849A2K/MF+-+Headshot+2023.jpeg The MSF Board & Advisors - Matthew Fuller, Ph.D. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1732129320773-XWPLNLJ47EK2YMHA0G4V/XMO+photo.jpg The MSF Board & Advisors - Xiulei Mo, Ph.D. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1732129381671-WMH1X6ZS4UM6OFBDR8X0/Mark+Lindsay+Photo.jpg The MSF Board & Advisors - Mark Lindsay, M.D., Ph.D. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1732129535495-RUYIE1XV6CY2CEIRSNUI/Dr%2BHongmei.png The MSF Board & Advisors - Hongmei Mou, Ph.D. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1732129614991-AD93TJ0WG7XFW0ANYEDX/Ferrer_Marc+Feb2019.jpg The MSF Board & Advisors - Marc Ferrer, Ph.D. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1732298533348-AX3544KFSUYIMFB8FGN0/Maria+Macias.png The MSF Board & Advisors - Maria Macias, Ph.D. https://www.myhresyndrome.org/contact daily 0.75 2025-05-29 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1614499085534-VENQNOAID22UVQO9V8S3/Myhre+Sub+Logo-01+%281%29.jpg Contact Us https://www.myhresyndrome.org/dr-angela-e-lin daily 0.75 2026-01-20 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1559956615735-75QUJC5GTJHH9F54ZVRF/dr.%2Blin.jpg Angela E. Lin Angela E. Lin M.D. https://www.myhresyndrome.org/kathy-horan-young daily 0.75 2023-08-21 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1559958432635-JPP5S2KEGYGU04FW3DBE/53057899_2280554538641596_1079854713513443328_o.jpg Kathy Horan Young Kathy and Anna https://www.myhresyndrome.org/ines-white daily 0.75 2024-03-27 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1559957654802-P00UGS38KO3TI8P41YMI/31301407_10156453880128945_9188460214800613376_n.jpg Ines White Inès with Chris, Sam and Katie https://www.myhresyndrome.org/justin-smith daily 0.75 2021-12-03 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1560606708948-D7XHYARQNEMERBU01QQF/Justin+family+fun.jpg Justin Smith Justin and family https://www.myhresyndrome.org/dr-nicolapierri daily 0.75 2024-12-30 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623174361033-I2UM2C0T0UJJ8DK5R8NK/nicola-brunetti-pierri-4.jpg Nicola-Pierri Nicola Brunetti-Pierri M.D. https://www.myhresyndrome.org/donate-1 daily 0.75 2019-08-05 https://www.myhresyndrome.org/dr-mark-e-lindsay daily 0.75 2024-12-30 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1565213610720-5ZH40CK02ZI2YNHUV57G/lindsay.jpg Mark E. Lindsay Mark E. Lindsay M.D., PhD https://www.myhresyndrome.org/valerie-cormierdaire daily 0.75 2023-01-03 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1565219359813-WAZK7TDRCTEP8ZE8MGJC/Pr-Valerie-Cormier-Daire.jpg Valerie Cormier-Daire Pr. Valérie Cormier-Daire https://www.myhresyndrome.org/dr-t-bernard-kinane daily 0.75 2024-12-30 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1565220728551-W2SOJ38NHN739WQH7VOY/kinane.jpg T. Bernard Kinane T. Bernard Kinane https://www.myhresyndrome.org/dr-bert-callewaert daily 0.75 2026-01-20 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623174217675-BW0ABAHM76N2D2R5HQ1L/Bert+Callewaert.jpg Bert Callewaert Bert Callewaert, M.D. https://www.myhresyndrome.org/myhre-syndrome-and-covid-19-qa daily 0.75 2021-02-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1604254544494-1G5L7IHMIT56ZRDYAZNC/coronavirus-4936055_1920.jpg Myhre Syndrome and COVID 19 Q&A https://www.myhresyndrome.org/the-many-faces-of-myhre daily 0.75 2021-02-22 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1604252738652-1RISIGEKKFFQRDGTNJA3/china%2Bblack%2Band%2Bwhite.jpg The Many Faces of Myhre https://www.myhresyndrome.org/myhre-syndrome-and-covid-19-a-special-message-from-the-pab daily 0.75 2021-02-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1604254886580-DP8JUHIBG1ZCK2R8OVKV/virus-4976408_1920.jpg Myhre Syndrome and COVID 19 - A special message from the PAB https://www.myhresyndrome.org/myhre-syndrome-and-covid-19-tips-from-the-pab daily 0.75 2021-02-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1604253866604-YMTZH3NYL01INBV52P01/covid-4948866_1920.jpg Myhre Syndrome and COVID 19 - Tips from the PAB https://www.myhresyndrome.org/new-page daily 0.75 2021-02-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1604253541221-E8QS2M9NFCGYN5ZOL2O6/virus-4999857_1280.png Myhre Syndrome and COVID 19 - How to stay healthy https://www.myhresyndrome.org/christiana-thomas daily 0.75 2025-05-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1746719240953-DEEQNGJ91FLYIF76799D/Christiana+head+shot+%281%29.png Christiana Thomas https://www.myhresyndrome.org/resource-library-1 daily 0.75 2021-02-21 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1560004229019-QQU7P9DJ5C2TUG823LG4/mghfc-logo-2x.png Resource Library (Copy) https://www.myhresyndrome.org/faq daily 0.75 2021-03-10 https://www.myhresyndrome.org/home-1 daily 1.0 2026-03-06 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/27a3759c-81cb-43b3-a1bf-42e597b6410c/Art+Website+Banner+%281200+%C3%97+200px%29+%282%29.png Home - 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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/v1/5c7804b5797f7410f57b25ea/1624644112999-D6XESQZYWB2OW445T0IU/Flag-Taiwan.jpg Directory - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/directory-massachusetts daily 0.75 2025-10-26 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1618704974678-X566IEURO3XX9J6T0O7L/MGHfC20.jpg Directory Massachusetts https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1618704611877-JT0PA9THRQX7OSECWGD1/Dr+Lin.jpg Directory Massachusetts Angela E Lin, MD - Genetics Medical Genetics Co-Director and Co-ordinator 617-726-1561 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1618705320823-BFRK8DRBBS3NVKV8AAPU/Dr.+Mark+Lindsey.jpg Directory Massachusetts Mark E Lindsay, MD, PhD - Cardiovascular Pediatric Carardiology, Co-Director 617-726-3826 https://www.myhresyndrome.org/dr-joseph-shieh daily 0.75 2021-04-25 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1619313878837-2BASNSZET6YSOMINO8WO/dr-joseph-shieh-md-320x320-2x.jpg Dr Joseph Shieh Dr. Joseph Shieh, MD, PhD https://www.myhresyndrome.org/mcgovern-awards daily 0.75 2021-05-08 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1620483689050-R2XEA9BOTSY0RB2I84VQ/MGHfC20.jpg McGovern Awards https://www.myhresyndrome.org/pab-research daily 0.75 2021-05-11 https://www.myhresyndrome.org/don-clark daily 0.75 2024-10-09 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1621361552306-3V0BLZ9SBMAVIS770A59/Clark_Don-2.jpg Don Clark - Barbara Spell Director https://www.myhresyndrome.org/directory-nebraska daily 0.75 2021-06-08 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623171495084-K8ETAAUFKD10OQCBM2GD/Lois-Starr+v2.jpg Directory Nebraska Lois J. Starr, MD, PhD, FAAP, FACMG Clinical Geneticist and Associate Professor of Pediatrics 402-559-6962 Genetic Medicine Munroe-Meyer Institute 985450 Nebraska Medical Center Omaha, NE 68198-5440 https://www.myhresyndrome.org/directory-bergen daily 0.75 2021-06-09 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623173256696-PM6B3EKDEHX9U36DHHP1/Dr.+Sofia+Douzgou+Houge.jpg Directory Bergen Sofia Douzgou Houge MD, PhD, FRCP Senior Consultant, Department of Medical Genetics, Haukeland University Hospital. Lonas Lies street 65, 5021, Bergen, Norway +47 55975475 Sofia.douzgou.houge@helse-bergen.no https://www.myhresyndrome.org/directory-paris daily 0.75 2021-06-08 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623172394586-A3YTVRM7LBXDSVFRY977/Pr-Valerie-Cormier-Daire.jpg Directory Paris Pr Valérie Cormier-Daire Service Génétique Clinique, CRMR MOC Université Paris Descartes Institut Imagine, Hôpital Necker-Enfants Malades 149 rue de Sèvres 75743 PARIS FRANCE 33 (0)1 42 19 27 13 https://www.myhresyndrome.org/directory-spokane daily 0.75 2021-06-08 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623173662437-RK7V2REURLVY01MV8BAI/Dr+Matt.jpg Directory Spokane Matt Thompson, MD Medical Director - Joya Child and Family Development, Spokane WA 319 W. 8th Ave, Spokane WA 99204 (509) 448 7337 https://www.myhresyndrome.org/directory-naples daily 0.75 2021-06-08 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623172926991-84SCVXPCIE8O8LJEMWAD/nicola-brunetti-pierri-4.jpg Directory Naples Nicola Brunetti-Pierri, M.D. Associate Investigator at the Telethon Institute of Genetics and Medicine (TIGEM), Pozzuoli, Italy and Associate Professor of Pediatrics ‘Federico II’ University, Naples, Italy. brunetti@tigem.it +39 08 1192 30661 https://www.myhresyndrome.org/directory-ghent daily 0.75 2021-06-08 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623174112555-7VMWM5CCNT5CW93RS1EX/Bert+Callewaert.jpg Directory Ghent Dr Bert Callewaert Clinical Geneticist Department of Medical Genetics, Ghent University Hospital, C. Heymanslaan 10, 9000 Ghent, Belgium Phone: +32 9 240 5026 Fax: +32 9 240 4970 Bert.Callewaert@Ugent.be https://www.myhresyndrome.org/directory-california daily 0.75 2025-02-11 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/ff85b39a-1a6b-4948-9d51-2b265170504e/suha.jpg Directory California - Make it stand out Suha Bachir, MD, MS Clinical Geneticist, Stanford Clinic https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623174457963-ZDY2H64HA4UFEIUP5RW8/dr-joseph-shieh-md-320x320-2x.jpg Directory California Joseph Shieh, MD, PhD Clinical Geneticist UCSF, 1825 Fourth St Sixth Floor, San Francisco, CA 94158 Joseph.Shieh2@ucsf.edu +1 415 476-2757 https://www.myhresyndrome.org/directory-taipei daily 0.75 2021-06-08 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623174713549-H438J5D0Z4KFFEUIO188/NC+Lee_1.jpg Directory Taipei Ni-Chung Lee, MD, PhD Medical Genetics and Pediatrics National Taiwan University Hospital, Taipei, Taiwan +886-2-23123456-71922 https://www.myhresyndrome.org/directory-michigan daily 0.75 2021-06-25 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1624642176013-XOBGY22OBZ7MZXYOTWP9/Dr+Vinod+Misra.jpg Directory Michigan Vinod K. Misra, MD, PHD, FAAP, FACMG Clinical Professor, Division of Genetic, Genomic & Metabolic Disorders Children’s Hospital of Michigan 3901 Beaubien Blvd, Detroit, MI 48201 P: 313-832-9330 | F: 313-993-8685 vmisra@dmc.org https://www.myhresyndrome.org/directory-ontario daily 0.75 2021-06-25 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1624641909289-MB7P2WJI2LZ5IS5EAC1J/Dr+greg-costain.jpg Directory Ontario Dr. Gregory Costain, MD, PhD, FRCPC Staff physician, Division of Clinical & Metabolic Genetics The Hospital for Sick Children (SickKids) 525 University Avenue, 9th floor, Suite 940, Toronto, Ontario, M5G 2L3, Canada Fax: 416-813-5345 E-mail: gregory.costain@sickkids.ca (Referrals should be directed to the Division of Clinical & Metabolic Genetics at SickKids, and must be made by an Ontario-based healthcare provider) https://www.myhresyndrome.org/directory-britishcolumbia daily 0.75 2021-08-17 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1624641026959-G9IGMGZCPI9BT6IOKI0O/Dr+jonathan-rayment.jpg Directory British Columbia Jonathan Rayment, MDCM MSc FRCP(C) Paediatric Respirologist, BC Children's Hospital, Clinical Assistant Professor, University of British Columbia Investigator, BC Children's Hospital Research Institute, Vancouver, BC V6T 1Z4, Canada (p) 604-875-2345 x4832 (f) 604-875-3293 https://www.myhresyndrome.org/directory-north-charleston daily 0.75 2021-06-25 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1624641513744-Y3UZ05Y734UNRGKSROF0/Dr+Mike-Lyons.jpg Directory North Charleston Michael J. Lyons, MD Associate Clinical Geneticist Greenwood Genetic Center - Charleston Office, 3520 West Montague Avenue, Suite 104, North Charleston, SC 29418 Phone: 843.746.1001 Fax: 843.746.1002 email: mlyons@ggc.org https://www.myhresyndrome.org/directory-texas daily 0.75 2025-10-27 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1629236211948-CDAIJL4N9A5BMBSQHCHK/Dr+Shaine+Morris.jpg Directory Texas Shaine Alaine Morris, M.D., M.P.H. | BCM Associate Professor Pediatrics - Cardiology Baylor College of Medicine Houston, Texas, United States TCH-West Tower (Clinic) Room: TXWT-19345, Houston, TX 77030 United States Phone: (832) 824-2728. Website: https://www.texaschildrens.org/departments/cardiovascular-genetics-program/conditions-we-treat shainem@bcm.edu https://www.myhresyndrome.org/funding daily 0.75 2026-02-04 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1631036595290-FRZLL5XJMLG3NWTZYJY9/Research+grant+pic.jpg Funding - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/directory-minnesota daily 0.75 2021-09-26 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1632634233798-RTGEJ6K3TAB76JRNSIMG/Dr+Bydon_Mohamad.png Directory Minnesota Dr. Mohamad Bydon, MD Neurosurgeon. Mayo Clinic, 200 First ST SW, Rochester, Minnesota 55905 P: 507-284-8167 | F: 507-284-5206 bydon.mohamad@mayo.edu Specialties: - Minimal access and minimally invasive surgery for spine disease - Tumors of the spinal cord and spinal column - Spinal deformity - Spontaneous spinal CSF leak - Chiari malformation - Stem cell therapies for degenerative spine disease and spinal cord injury - Robotic and advanced navigation surgery https://www.myhresyndrome.org/newsletters daily 0.75 2022-07-04 https://www.myhresyndrome.org/summer-seminars daily 0.75 2022-07-22 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/a55ab1a0-c3dd-42d0-b005-0908a03b38d7/Eleanor+2.jpg Summer Seminars https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/f2245c25-9d11-4d00-9fcc-a7a7f43e3086/Dr+Cohen.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/487e610e-577d-420d-80bf-9084fe9cab2a/Dr+Kinane.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/0af22205-df06-42c6-b75e-0bc8c2e83eca/Dr+Tan.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/6364b61c-4d91-4c4d-bde6-be80cf1a342b/Dr.+Mark+Lindsey.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/c47dc140-e738-4202-b172-6c75d3035847/Dr+Thom.jpeg Summer Seminars https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/595332b0-5b83-4457-b4c3-ca7603d69aad/Dr+Lynne+L.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/cd37b0d6-5181-4ecc-8730-f673b2fbb494/patti+web.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/aaa2b6bb-3e3b-44b6-98e3-dbd4eb25d7f1/Heidary+Color+Image+%28002%29.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/5c058e07-4fd9-453a-9c45-950c71df320d/Brigette+Jason.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/1eb954af-9f89-4ca4-8bc0-ca7e14e11bc1/Dr+Lilly.jpg Summer Seminars https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/167cf6a2-68ff-45f3-9b6c-a4817ea37705/Dr+Lin.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/cf0ac8cc-0140-4cc9-9ab1-e38af4179b78/Headshot+Kate+Wears+.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/91513f25-b914-4486-89e9-3bbfff198565/Dr+Kadzielski.jpg Summer Seminars - 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/v1/5c7804b5797f7410f57b25ea/e15d2de8-b9f5-46ca-9b87-068ae620ccf3/Blank+person.jpg Summer Seminars - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/handbook daily 0.75 2025-05-29 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/7bdc60d6-e7db-4a33-936e-05241eb62d5d/Handbook+Cover.png Handbook - 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/v1/5c7804b5797f7410f57b25ea/48541fc5-22bd-4f2d-8140-382b0372bb4e/Genereviews+Cover.png Handbook - 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/v1/5c7804b5797f7410f57b25ea/9f76cf7a-8c5b-4c37-9c30-f3f046e357c2/Research+Cover.png Handbook - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/krispy daily 0.75 2023-03-21 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/c94894db-b72d-4e98-8e74-bd453ae22602/krispy+3.jpg Krispy - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/donate-now daily 0.75 2023-01-30 https://www.myhresyndrome.org/jessica-simkins daily 0.75 2023-03-20 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/aa37cb14-57f2-48fc-a31e-7d0189f7fddd/Jessica+Simkins.JPG Jessica Simkins https://www.myhresyndrome.org/tcs daily 0.75 2024-11-20 https://www.myhresyndrome.org/dr-hongmei-mou daily 0.75 2024-12-30 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/83f377fa-676d-4504-9b45-bfe4fbbccff3/Dr+Hongmei.png Hongmei Mou Hongmei Mou, Ph.D. https://www.myhresyndrome.org/2024-conference daily 0.75 2024-06-25 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/9db2f6c8-b031-44b2-aa65-c46a3dea0133/Black+and+White+Collage+Adopt+a+Cat+Facebook+Fundraiser+Cover+Photo+%283%29.png 2024 Conference - 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/v1/5c7804b5797f7410f57b25ea/c4aadbe1-38c4-4c6f-9599-bca531e8e7f7/MSF+Family+Conference+2024+%282%29.png 2024 Conference - 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/v1/5c7804b5797f7410f57b25ea/c45c237b-62b5-4e09-9791-d3e30832b2b3/MSF+Family+Conference+2024+%281%29.png 2024 Conference - 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/v1/5c7804b5797f7410f57b25ea/e1e9824b-f5d1-4007-bf40-28b678a58b42/MSF+Family+Conference+2024+%283%29.png 2024 Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/grants-2021 daily 0.75 2023-11-01 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1631036595290-FRZLL5XJMLG3NWTZYJY9/Research+grant+pic.jpg Grants (2021) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/tcs-conference daily 0.75 2024-02-06 https://www.myhresyndrome.org/zac-burns daily 0.75 2024-03-29 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/60827a30-dcba-4d74-9baf-d8ba763b79bd/Zac+Burns+Headshot.jpg Zac Burns Zac Burns - Director https://www.myhresyndrome.org/committee daily 0.75 2024-09-27 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/29fd1b82-b58a-4b82-a156-e947596f6281/Grants+image+2.jpg Research Committee - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/support-organizations daily 0.75 2024-11-08 https://www.myhresyndrome.org/emergency daily 0.75 2025-05-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/cedb8a7a-db85-4a89-b371-3dab0c9c5719/Emergency+Card+image.png Emergency Information - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/fundraise daily 0.75 2024-09-26 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/e04aa84e-072e-4d57-ab76-3f94ad4ac514/IMG_5734.jpg Fundraise - 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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/v1/5c7804b5797f7410f57b25ea/4a1f3680-b0a3-4ec3-8d5a-766ebe3b7b89/20220805_160926.jpg Family Resources - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/mary-young daily 0.75 2024-10-09 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/934df7e2-15ae-4c31-bb29-a5ad71102b85/Mary+Young+and+Sister+Anna.jpg Mary Young Mary and her sister, Anna. https://www.myhresyndrome.org/material daily 0.75 2024-10-11 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/804f4fb8-24fd-441e-8861-9aec160d2d7b/dna-molecule-testing-concepts-doctor-mask-examines-dna-molecules-chemical-laboratory-with-virtual-icon.jpg Material & Assays - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/platform daily 0.75 2025-08-06 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/f1612994-772d-42ff-8ad1-0437199e323a/Myhre_Journal+Graphics_A4_May+25_v2+Proof.pdf+%281%29.png Preclinical Platform - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/patient-registry-data daily 0.75 2024-10-13 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1631077428108-C105F1KTZ6CNI6D81S5O/patient+registry+logo.png Patient Registry Data - Myhre Syndrome Patient Registry Enrolling in the Myhre Syndrome Patient Registry at CoRDS (Coordination of Rare Diseases at Sanford) is one of the most effective ways to help research and clinical treatment for those living with Myhre syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/016eb450-5ea4-4b2d-9e6b-af279db01330/Registry.png Patient Registry Data - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/susan-murphy daily 0.75 2024-10-15 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/cdf4c992-0d76-4c3a-abf5-05576f8a6236/Susan+Murphy.jpg Susan Murphy - Barbara Spell Director https://www.myhresyndrome.org/volunteering daily 0.75 2026-02-25 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/3407b230-58cb-46dc-8f68-9bf13a48c5f6/20240726_171534.jpg Volunteering - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/armelle-pindon daily 0.75 2024-11-01 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/013c2891-aaf2-4de6-8821-0dbe976d7502/Armelle+Pindon_edited_edited+%281%29.jpg Armelle Pindon https://www.myhresyndrome.org/marc-ferrer daily 0.75 2024-11-20 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1732129614991-AD93TJ0WG7XFW0ANYEDX/Ferrer_Marc+Feb2019.jpg Marc Ferrer Marc Ferrer, Ph.D https://www.myhresyndrome.org/xiulei-mo daily 0.75 2024-11-20 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1732129320773-XWPLNLJ47EK2YMHA0G4V/XMO+photo.jpg Xiulei Mo Xiulei Mo, Ph.D https://www.myhresyndrome.org/matthew-fuller daily 0.75 2024-11-20 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1732129295889-YYHNZ5RYVRQRQ4849A2K/MF+-+Headshot+2023.jpeg Matthew Fuller Matthew Fuller, Ph.D https://www.myhresyndrome.org/mab daily 0.75 2024-11-20 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1565222607309-473CRXQF5S53BDQKGFIM/lin.jpg MAB - Angela E. Lin - M.D. (Geneticist) https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1565222409487-1AH4UM1Q1ZLJLJNZOKWE/lindsay.jpg MAB - Mark E. Lindsay - Ph.D, M.D. (Cardiologist) https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1577721118765-ONUETHKW5DTBJ9DY6ZS4/Pr-Valerie-Cormier-Daire.jpg MAB - Valerie Cormier-Daire - Ph.D, M.D (Geneticist) https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623689451237-9NBZ19NHGTZ411TQUTKO/nicola-brunetti-pierri-4.jpg MAB - Nicola Brunetti-Pierri - M.D. (Geneticist) https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623689497340-N6T3STE7S0GFVZI39ADG/Bert+Callewaert.jpg MAB - Bert Callewaert - M.D. (Geneticist) https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1755991711825-B7YLP3SAP7F8SB9UMIJS/Dr%2BShaine%2BMorris.jpg MAB - Shaine Morris - M.D., M.P.H. (Pediatric Cardiologist) https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1756833357684-42ZT4KPK6OFJW8VYBVWV/neptune-enid-1518051416.jpg MAB - Enid Neptune - M.D. (Pulmonology) https://www.myhresyndrome.org/maria-macias daily 0.75 2024-11-22 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1732298159913-AMZLTPMV2K9XFPG0MYV3/Maria+Macias.png Maria Macias Maria Macias, Ph.D https://www.myhresyndrome.org/stefan-scherer daily 0.75 2024-12-30 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/da08d5d4-702d-4987-a3f2-94fc82eb82c9/Stefan+Scherer.png Stefan Scherer Stefan Scherer, M.D., Ph.D https://www.myhresyndrome.org/clinicaloverview daily 0.75 2025-07-21 https://www.myhresyndrome.org/roadshows daily 0.75 2025-05-23 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/e22fb33f-8add-4248-9da1-7788f5444ea6/Roadshows.jpg Roadshows - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/betsy-cox daily 0.75 2025-05-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/4a695393-0229-459b-988e-e36c0b0d11cc/IMG_3108.jpg Betsy Cox Betsy and Cal https://www.myhresyndrome.org/yvette-murray daily 0.75 2025-05-29 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/9a9f7848-14f5-4cde-984e-ef3a1bf0b72d/Yvette+head+shot.png Yvette Murray https://www.myhresyndrome.org/michelle-smith daily 0.75 2025-06-06 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/49986601-b7f7-4f05-bb75-605a970501a7/2L6A0952.jpg Michelle Smith Michelle and Family https://www.myhresyndrome.org/shaine-morris daily 0.75 2025-08-24 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1755991711825-B7YLP3SAP7F8SB9UMIJS/Dr%2BShaine%2BMorris.jpg Shaine Morris Shaine Morris, M.D., M.P.H. https://www.myhresyndrome.org/new-page-2 daily 0.75 2025-08-24 https://www.myhresyndrome.org/enid-neptune daily 0.75 2025-09-02 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1756833357684-42ZT4KPK6OFJW8VYBVWV/neptune-enid-1518051416.jpg Enid Neptune Enid Neptune https://www.myhresyndrome.org/funding-closed daily 0.75 2025-09-05 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1631036595290-FRZLL5XJMLG3NWTZYJY9/Research+grant+pic.jpg Funding - 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/v1/5c7804b5797f7410f57b25ea/1757523406851-O4R04BY02WDCUB2IMFJ0/Mo+Lab+for+Website.png Funding - Emory University NEO-PPI Emory University NEO-PPI https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1757622860331-H8NVZJ7V6DO59TYI16HJ/Genethon.png Funding - Genethon FAP CAR T https://www.myhresyndrome.org/store daily 0.75 2023-05-26