https://www.dync1h1.org/stories daily 0.75 2026-02-19 https://www.dync1h1.org/stories/welcome-to-our-spring-2026-interns monthly 0.5 2026-02-19 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/79caaee3-23d1-47f6-9128-9284b15a66e5/caroline+welcome.jpg Community Stories - Welcome to our Spring 2026 Interns! - Make it stand out Image: The DYNC1H1 Association in partnership with the Orphan Disease Center is proud to introduce Caroline Barabell, 2026 Genetic Counseling Student Exchange intern. https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/7b0c2277-40ad-4440-9be5-5860a55e65ca/Sci+Comm+Intern+Intro+%281%29.png Community Stories - Welcome to our Spring 2026 Interns! - Make it stand out Image description: The DYNC1H1 Association is proud to introduce Maya English, Science Communication Spring 2026. Maya is studying for a PhD at UPenn, where she focuses on the cellular biology behind neurodegeneration associated transport disorders, like DRD. Welcome, Maya! https://www.dync1h1.org/stories/meet-ellie-j monthly 0.5 2026-01-14 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1768319107126-FICCHE1CY6HXMIC9BCOH/Ellie+J+5.jpg Community Stories - Meet Ellie J https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1768319107133-X8TMG0JVELMHD4Y34E7J/Ellie+J+4.jpg Community Stories - Meet Ellie J https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1768319108117-SU50W1CDQLP85I41YVSK/Ellie+J+3.jpg Community Stories - Meet Ellie J https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1768319109182-0R6S0NQP1BY4VGYL9ZLJ/Ellie+J.jpg Community Stories - Meet Ellie J https://www.dync1h1.org/stories/drd-through-the-lifespan-a-panel-discussion monthly 0.5 2026-01-13 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/440b4d98-3313-4239-9a4d-00066a8c2eeb/20251224_134551.jpg Community Stories - DRD Through the Lifespan: A Panel Discussion - Key takeaways Progression and regression vary significantly among individuals with DYNC1H1-related disorders (DRD) Motor skills typically have slow improvement throughout childhood, with slow regression in teenage to adulthood. Behavioral issues will often become less significant with age. Cognitive issues typically remain consistent through the lifespan, with intellectual disability being common in about 75% of patients. Seizures affect approximately 40% of DRD patients, with varying severity and impact on daily life. Sometime seizures may not present until adulthood. GI symptoms are common, including slow gut motility, feeding difficulties, and toileting challenges including late and inconsistent bladder control. Transitioning to adulthood requires early planning, community building, and consideration of day programs https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/e73f0129-c353-4f3a-8b13-ef6f17ce8aa4/2008_0728summer080067.jpeg Community Stories - DRD Through the Lifespan: A Panel Discussion - John: For Nichole, whose cognitive level is about 2-3 years old, transition wasn't about independent living but finding a world where she was understood and accepted. She attends a day program for adults with developmental disabilities and goes into the community with a one-on-one provider. Building that community before leaving public school would have made day-to-day adulthood easier. Pam: Noted that Michigan allows students to remain in school until age 26, which was beneficial. Their school had a transition specialist who helped with practical matters like getting an ID at 18 and applying for Social Security. Allie now attends a day program and has direct-hire people who take her into the community, and the relationships Pam built in Ally’s school years is still valuable to her now. Jannine: Focuses on stress mitigation, emotional regulation, and respecting her children's bodily experiences and self-limits. For her eldest daughter Bethany, who's an artist, she hopes to develop an online hobby business to provide purpose and community. Both daughters are homeschooled due to infection control concerns. Jannine was able to attend university and was a registered nurse until the physical demands became overwhelming, and she wishes that she had chosen a less physically demanding field that would have allowed her greater respite for her physical needs. https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/e73492f9-2d44-4bfc-9ef1-e97b91fb3232/IMG_1124.jpeg Community Stories - DRD Through the Lifespan: A Panel Discussion - Pam: Allie had failure to thrive and severe reflux as a baby. She has experienced choking incidents, so the family keeps a Life-Vac de-choking device in the home. Toilet training was challenging due to mobility issues, but Allie eventually became toilet trained at age 13 and remains so at age 30. Jannine: Both daughters have avoidant restrictive food intake disorder (ARFID) with food aversions to textures, smells, and colors. Jannine herself has gastroparesis (slow-moving stomach muscles) and dysphagia (difficulty swallowing). The family experiences autonomic nervous system issues affecting bowel and bladder function, with chronic constipation in both daughters since 12 months of age, as well as complications with bladder control. John: Nichole has slow gut motility issues. Greasy or high-fiber foods can cause diarrhea. Diet management has been experimental to find what works best. Nichole uses the toilet independently but wears protection, as she doesn't always make it in time. Conclusion GI issues are common in DRD patients, including feeding difficulties and slow gut motility that can cause constipation. Toilet training may be delayed but is often achievable with persistence, effort, and a bit of luck. Food sensitivities and restrictive eating patterns are common. Creating a neutral emotional environment around food can be helpful, a calorie is a calorie. https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/8a07d954-1fdb-458d-bd82-9b42ae775588/NickMaddy1295.jpeg Community Stories - DRD Through the Lifespan: A Panel Discussion - Make it stand out Ally as Maid of Honor at her sister Maddy’s wedding https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/268c6a99-6318-4127-b4e5-fb86aaae8274/Pink+Illustration+Group+Chat+Instagram+Post.png Community Stories - DRD Through the Lifespan: A Panel Discussion - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/stories/puzzles-for-piper monthly 0.5 2025-09-11 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757509361546-QXADMB4KDM9Q0NJQQP0S/1000053868.jpg Community Stories - Puzzles for Piper: A Community Coming Together for Rare Disease Research https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757509362860-1GU3B3BFGMQ4QDQP9GGA/1000053828.jpg Community Stories - Puzzles for Piper: A Community Coming Together for Rare Disease Research https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757509363016-WSQTZKJLYQ890ZH9TYQ3/1000053829.jpg Community Stories - Puzzles for Piper: A Community Coming Together for Rare Disease Research https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757509365672-72BMH0GFPMKIAIHC2WVB/1000053837.jpg Community Stories - Puzzles for Piper: A Community Coming Together for Rare Disease Research https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757509124934-E6MCFLV377GGE0SKCI08/6.jpg Community Stories - Puzzles for Piper: A Community Coming Together for Rare Disease Research https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757509124944-2L45SO5AGBVQ660NWTGR/7.jpg Community Stories - Puzzles for Piper: A Community Coming Together for Rare Disease Research https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757509166053-ZH6CDEPGA9KROIMXJ9VR/2025+Dync1h1+Association+Jigsaw+Puzzle+Competition+Flyer+%281%29.jpg Community Stories - Puzzles for Piper: A Community Coming Together for Rare Disease Research https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757509126302-HTYXTKM4JURF15V8Z74T/9.jpg Community Stories - Puzzles for Piper: A Community Coming Together for Rare Disease Research https://www.dync1h1.org/stories/john-davis-diagnostic-journey monthly 0.5 2025-09-10 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/f2679862-506f-45a0-a629-a041ad79302b/Screenshot+2025-09-10+at+7.53.42%E2%80%AFAM.png Community Stories - John Davis’ Diagnostic Journey - Meet JD! John Davis loves cars, trucks, trains, and airplanes. He enjoys swimming, swinging at the park, going to the zoo, and playing with his baby sister https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757505271764-DAWICIZKA8O8PVFJCT4L/Screenshot+2025-09-10+at+7.54.13%E2%80%AFAM.png Community Stories - John Davis’ Diagnostic Journey https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757505271641-FYYJB4P8KELQRG8H8UP1/Screenshot+2025-09-10+at+7.54.04%E2%80%AFAM.png Community Stories - John Davis’ Diagnostic Journey https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757505276283-MFWVXVI6U5F3JJXW0OAP/Screenshot+2025-09-10+at+7.53.58%E2%80%AFAM.png Community Stories - John Davis’ Diagnostic Journey https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1757505276325-TDMQJXPR53INXZYH3B9U/Screenshot+2025-09-10+at+7.53.51%E2%80%AFAM.png Community Stories - John Davis’ Diagnostic Journey https://www.dync1h1.org/stories/meet-our-sab-genetic-counselor monthly 0.5 2025-04-15 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/b8ef5602-7e1a-4a08-9f42-f39b8c8fc6fb/DSC_0717-Enhanced-NRlr.jpg Community Stories - Interview with a Genetic Counselor - Get to know our Scientific Advisory Board! Rozalia Valentine is a licensed genetic counselor and currently serves on the DYNC1H1 Scientific Advisory Board. She answered some common questions about genetic counseling for our community below. https://www.dync1h1.org/stories/ingrid monthly 0.5 2025-03-05 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/b63b46df-eb04-4ea3-8172-ffee894116e8/Ingrid.jpg Community Stories - Individual Spotlight: Ingrid - 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/v1/64877ecf563f880601a934cc/1741175052184-5LPWZ72TZK3KPVI4YT2Z/image0+%283%29.jpeg Community Stories - Individual Spotlight: Ingrid https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1741175028713-PT0FD8AFI2SBW8XWGLSY/vogelerfamily-059.jpg Community Stories - Individual Spotlight: Ingrid https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1741175034889-9ZRK630FJUT4WWQRAXZC/Screen+Shot+2025-03-05+at+6.29.29+AM.png Community Stories - Individual Spotlight: Ingrid https://www.dync1h1.org/stories/l6cjrjnjdz252bprb4ra16ff602mg4 monthly 0.5 2025-02-23 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/4a9df5b9-94ed-472a-b9f0-cfaff4994660/rare+disease+day+%281%29.png Community Stories - Show your Support on Rare Disease Day! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/stories/sibling-story-alec-and-connor monthly 0.5 2024-12-06 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/89b0868a-a122-49eb-b7a6-83ec5d49abeb/3A8877D5-7118-4E1A-8F02-1032CB43318B.jpeg Community Stories - Sibling Story: Alec and Conor - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/stories/cybermonday2024 monthly 0.5 2024-12-01 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/fc15edb5-1b42-471e-ab99-8a1a3ca8f641/1.jpg Community Stories - Use your Cyber Monday Purchase to support the DA - Shop Smart: Save Big This Cyber Monday While Supporting a Cure for DYNC1H1 Related Disorders! Discover amazing deals this Cyber Monday on several useful items available on Amazon! This is your chance to not only save money but also support the DYNC1H1 Association in its quest for a cure. By shopping through our Amazon Affiliate links, you can make a difference without the need for a direct donation. Every purchase helps fund our research initiatives, allowing us to continue our vital work while you enjoy fantastic savings. Take advantage of these great offers today and support a worthy cause! Here are a few items that are on sale this week (at least for the US) and are well-loved by DYNC1H1 families: Equipment, Clothing, & Health: The Owlet Dream Sock can monitor oxygen & heart rate in infants through five years old through a bluetooth connection. A major way to gain peace of mind when seizures are suspected or known. $100 off for Cyber Monday. A rotating 3-in-1 car seat & booster that makes it easy to help older kids get in and buckled! 35% off for cyber Monday! A folding portable potty seat with handles - great for our skinny hipped kids or late potty trainers while traveling this holiday season! $5 off! Vapor Bath Bombs from trusted brand Frida Baby - keep that congestion away, and 30% off for Cyber Monday. Fingerless gloves for adults - perfect for keeping sensitive hands warm. Fleece easy-on baby booties with grippy bottoms. Many families find they fit over SMOs, and thinner AFOs. Keep warm with the weather dropping! Beco Toddler Carrier for kids weighing 20-60 lbs, easy on and off even through 3-4 years old. 30% off - the best price in a year! https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/8d927cfe-3c9e-460e-8290-794984d02e73/2.jpg Community Stories - Use your Cyber Monday Purchase to support the DA - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/stories/15000-match monthly 0.5 2024-11-18 https://www.dync1h1.org/stories/inherited-dync1h1-story monthly 0.5 2024-09-18 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/30e75414-9475-4bb3-a362-b38b204f59b7/Screen+Shot+2024-09-18+at+9.49.55+AM.png Community Stories - Inherited DYNC1H1: A Mother Shares Her Story of DYNC1H1 in Herself and Her Two Daughters - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/stories/career-decisions monthly 0.5 2024-09-06 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/6211cabe-92a3-4758-8123-c11c90f5e06c/Daphni+and+Connor.jpeg Community Stories - Making the Difficult Decision to Step Back from my Career to be a Full-time Caregiver - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/stories/amazon monthly 0.5 2024-07-16 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/5079e10f-fb12-485a-a6c4-0a420c0b1fd5/Amazon+Affiliate+Links+%281%29.png Community Stories - Use your Amazon Purchases to support the DA! - How? Click the any link on this post to go to Amazon. Put desired items in your cart. Purchase! As an Amazon Associate we earn from qualifying purchases. The DYNC1H1 Association will automatically receive commission from any items that you put in your cart after following the DA’s affiliate link. https://www.dync1h1.org/stories/explaining-your-complex-child-to-other-children monthly 0.5 2024-06-05 https://www.dync1h1.org/stories/category/fundraising monthly 0.5 https://www.dync1h1.org/stories/category/Fundraising monthly 0.5 https://www.dync1h1.org/stories/category/Special+Needs+Shopping monthly 0.5 https://www.dync1h1.org/stories/tag/adaptive+equipment monthly 0.5 https://www.dync1h1.org/stories/tag/DYNC1H1 monthly 0.5 https://www.dync1h1.org/stories/tag/%23ParentsasCaregivers monthly 0.5 https://www.dync1h1.org/stories/tag/rare+disease monthly 0.5 https://www.dync1h1.org/stories/tag/%23AdultPatients monthly 0.5 https://www.dync1h1.org/stories/tag/amazon+affiliate monthly 0.5 https://www.dync1h1.org/stories/tag/%23DYNC1H1 monthly 0.5 https://www.dync1h1.org/stories/tag/%23community monthly 0.5 https://www.dync1h1.org/stories/tag/%23Fundraising monthly 0.5 https://www.dync1h1.org/stories/tag/DAND monthly 0.5 https://www.dync1h1.org/stories/tag/%23Race+to+a+Cure monthly 0.5 https://www.dync1h1.org/stories/tag/%23iPSCs monthly 0.5 https://www.dync1h1.org/events daily 0.75 2025-12-11 https://www.dync1h1.org/events/surveys-together-da-community-research-completion-hour monthly 0.5 2025-12-11 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/e21e1fd5-28cc-483c-8765-b0da87d1af07/survey+together+promo.png Events - Surveys Together: DA Community Research Completion Hour - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/events/drd-through-the-lifespan monthly 0.5 2025-12-01 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/f3ec79b8-6547-4742-a038-f04fbaae2f71/Pink+Illustration+Group+Chat+Instagram+Post+%282%29.png Events - DRD Through the Lifespan - Panel Community Chat - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/events/dync1h1biology monthly 0.5 2025-11-10 https://www.dync1h1.org/events/community-conversation-discussing-speech-and-aac-with-a-slp-and-mom-of-son-with-dync1h1 monthly 0.5 2025-10-29 https://www.dync1h1.org/events/puzzles-for-piper-1 monthly 0.5 2025-07-24 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/a1ff5a16-0db3-420d-8e40-5b0cb48c4365/Copy+of+Dync1h1+Association+Jigsaw+Puzzle+Competition+Flyer+%283%29.png Events - Puzzles for Piper - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/events/virtualwalk monthly 0.5 2025-04-24 https://www.dync1h1.org/events/cvi monthly 0.5 2025-03-31 https://www.dync1h1.org/events/community-chat-oct monthly 0.5 2024-10-18 https://www.dync1h1.org/events/dr-dafsari monthly 0.5 2024-08-20 https://www.dync1h1.org/events/grants-and-funding monthly 0.5 2024-08-02 https://www.dync1h1.org/events/all-things-aac monthly 0.5 2024-07-17 https://www.dync1h1.org/events/september-community-chat monthly 0.5 2024-08-02 https://www.dync1h1.org/events/29pv58n0a75540atukg1cg26lgmiqa monthly 0.5 2024-08-02 https://www.dync1h1.org/events/july-community-chat monthly 0.5 2024-07-09 https://www.dync1h1.org/events/iep-crash-course monthly 0.5 2024-04-12 https://www.dync1h1.org/events/scientific-roundtable-w-dr-peter-baas monthly 0.5 2023-12-27 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/816b3490-0f76-4a85-9339-c4c2f8d4a35f/Copy+of+Tosca+Yellow+Gradient+Corporate+Online+Meeting+Invitation.png Events - Scientific Roundtable w. Dr. Peter Baas - Register on Zoom here: Zoom Registration Join us for a technical discussion of “Microtubule polarity flaws as a treatable driver of neurodegeneration” by Dr. Peter Baas. The Baas laboratory at Drexel University researches the underlying mechanisms of neurodegeneration and dysfunction of the nervous system, resulting from degenerative diseases, developmental disorders and injury, with the goal of developing therapies for prevention, treatment and repair. Rather than focusing on just one type of disease, disorder or injury, they focus on a common downstream target that goes awry across almost all of them. While the Baas lab does not focus directly on DYNC1H1 encoded dynein, their focus is instead on the cytoskeleton that the dynein uses as its highway. Patients who have gene variants in the microtubule binding domain of DYNC1H1 tend to have significant cognitive and physical impairments. By focusing on the interaction between microtubules and dynein, there is hope that treatments can be discovered that are able to be universally applied, not just for those variants but for many motor protein driven diseases. For more information, visit the Baas Lab website here: Peter Baas Laboratory at Drexel University https://www.dync1h1.org/events/community-chat monthly 0.5 2023-12-11 https://www.dync1h1.org/events/scientific-roundtable monthly 0.5 2023-10-18 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/3734f241-c43b-49bc-9c7d-e720aadafdfa/Tosca+Yellow+Gradient+Corporate+Online+Meeting+Invitation.png Events - Scientific Roundtable ft. Dr. Erika Holzbaur - Register here: https://zoom.us/meeting/register/tJYsdOmhpj0jEtEVvNP5foP2CMCC7s9xzp4L Join us as we learn from Dr. Erika Holzbaur about the important role that DYNC1H1-encoded proteins called Dynein play in brain cells. Dynein dysfunction is a cause of the variety of symptoms that show up in those who have DYNC1H1- Associated Neurological Disorders. Dr. Erika Holzbaur is a professor at the Perelman School of Medicine at the University of Pennsylvania. Her laboratory is dedicated to the research of motor proteins and their role in various neurodegenerative diseases. Her lab studies “mechanisms of force production and motor function, mechanisms of cargo coupling and regulation, effects of dynein and dynactin on dynamics of the cytoskeleton, and the analysis of neurodegenerative diseases resulting from impairments in dynein/dynactin function. Disruptions in dynein/dynactin function cause motor neuron degeneration and muscle atrophy, leading to motor neuron diseases similar to ALS.” Dr. Erika Holzbaur is a member of the DYNC1H1 Association Scientific Advisory Board, and we are delighted to have her speak. https://www.dync1h1.org/events/chat-with-a-genetic-counselor monthly 0.5 2023-08-09 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/83d8c909-1814-412e-912a-3b6e82c0d9dd/Purple+Modern+Marketing+Webinar+Announcement+Instagram+Post+%281%29.png Events - Chat with a Genetic Counselor - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/events/simons-searchlight monthly 0.5 2023-08-09 https://www.dync1h1.org/events/kickoff monthly 0.5 2023-08-09 https://www.dync1h1.org/research-updates daily 0.75 2026-02-24 https://www.dync1h1.org/research-updates/clinical-trial-radar-epilepsy-amp-seizure-research-opportunities monthly 0.5 2026-02-24 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/b0f68853-cb46-4068-a086-6777df7a5398/Participate+%28Instagram+Post+%2845%29%29.png Research Updates - Clinical Trial Radar: Epilepsy & Seizure Research Opportunities At the DYNC1H1 Association, we regularly search ClinicalTrials.gov to help families stay informed about research studies that may be relevant to their loved ones. This time, we’re highlighting research focused on epilepsy and seizure treatments, including studies enrolling children and adults with Developmental and Epileptic Encephalopathies (DEE). Anyone can search ClinicalTrials.gov by keyword, and we encourage families to explore it. Research moves forward because of families like yours who are willing to ask questions, learn more, and sometimes participate. Please note: The DYNC1H1 Association is not involved in the studies listed below, and we are not providing medical advice. Our goal is simply to share information so families are aware of potential opportunities. If you are interested in a study, please contact the study team directly and speak with your medical provider. https://www.dync1h1.org/research-updates/accelerating-research-for-dync1h1 monthly 0.5 2025-12-02 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/ba5b9cd3-c541-4b7b-b10d-e3fdaa908df2/insta+How+to+drug+repurposing.png Research Updates - Accelerating Research for DYNC1H1-Related Disorders: Our Path to a Cure. - 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/v1/64877ecf563f880601a934cc/017ba19b-c6f8-4737-8ed5-a1f3372f4af0/why+choose+us+digital+marketing+template+%28Facebook+Post%29.png Research Updates - Accelerating Research for DYNC1H1-Related Disorders: Our Path to a Cure. - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.dync1h1.org/research-updates/new-quarterly-clinical-trial-radar monthly 0.5 2025-10-12 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/fc0dfe1e-cedc-40f1-86d9-3577ebb75309/Participate+%28Instagram+Post+%2845%29%29+%281%29.png Research Updates - New: Quarterly Clinical Trial Radar - While we work and wait for DYNC1H1 targeted treatments, there are others out developing symptom-related treatments. Learn how to join their research in our new quarterly blog series, the Clinical Trial Radar. The DYNC1H1 Association periodically searches ClinicalTrials.gov for research studies that families may be interested in participating in. Each season we will select several to share with the community. This Fall’s focus: Behavioral and Developmental Disorders like Autism, ADHD, and Intellectual disability. https://www.dync1h1.org/research-updates/cmt-trial monthly 0.5 2025-04-16 https://www.dync1h1.org/research-updates/case-study-bone-cancer-in-a-teen-with-a-dync1h1-related-disorder monthly 0.5 2025-05-05 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1745281e-f4ba-4235-afed-9b5a9d58d171/Osteosarcoma-childhood.jpg Research Updates - Case Study: Bone Cancer in a Teen with a DYNC1H1-Related Disorder - Make it stand out An image showing an osteosarcoma tumor on the femur (thigh bone). Source: American Childhood Cancer Organization https://www.dync1h1.org/research-updates/6-things-after-diagnosis monthly 0.5 2024-12-01 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1733073105864-VOWDQIHBQJ5IJ29X3RKH/1.jpg Research Updates - 6 Things to do after a DYNC1H1-Related diagnosis https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1733073105909-HA1IW7DV9DCKG8C14OEO/2.jpg Research Updates - 6 Things to do after a DYNC1H1-Related diagnosis https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1733073105136-CUK9LVIZ8C2GXXOH3814/3.jpg Research Updates - 6 Things to do after a DYNC1H1-Related diagnosis https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/1733073105153-IY5S4OW5FHU524LSMIO2/4.jpg Research Updates - 6 Things to do after a DYNC1H1-Related diagnosis https://www.dync1h1.org/research-updates/join-the-race-for-dync1h1-treatments monthly 0.5 2024-09-10 https://www.dync1h1.org/research-updates/diagnostic2 monthly 0.5 2024-07-22 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/e754a715-b4f5-4c1f-a5df-82c9657ccf7e/medical+procedures+odyssey.png Research Updates - Insights into the Diagnostic Odyssey part 2: Medical Procedures - Make it stand out 14 graphs showing the percent of the DAND community who have experienced different medical procedures, both for physical and behavioral disorders. https://www.dync1h1.org/research-updates/major-publication-summary monthly 0.5 2024-07-15 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/c0762710-77e5-4838-9a2d-480277846967/Mo%CC%88ller+et+al.%2C+Brain%2C+Figure1.png Research Updates - Major Publication: Moller et al, 2024 - Make it stand out The majority of patients were Caucasian, with the US and Europe comprising the vast majority of study participants. More patients were male than female, with about 17% of patients being male between 10-14 years old and 13% being female between 6-9 years old. https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/dcbaee43-60c5-40aa-9ec4-6db7ec5863ed/figure+5+moller+2024+disease+progression.png Research Updates - Major Publication: Moller et al, 2024 - Make it stand out Figure 5 from Möller et all, 2024. Common symptoms and symptom progression from infancy/young childhood, adolescence, and adulthood. https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/034f3964-8ec0-4fdc-b5fc-77462836f4ad/Untitled+%281080+x+800+px%29.png Research Updates - Major Publication: Moller et al, 2024 - Make it stand out Images of the left and right feet of a DAND affected newborn. The right foot is twisted out, and the left is pulled to the shin and puffy. https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/dca8b48b-06d5-4ae1-aaab-1340c215bc62/seizure+stats+brain+2024.png Research Updates - Major Publication: Moller et al, 2024 - Make it stand out Generalized motor seizures were the most commonly reported. https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/a85d04da-0f8d-43bf-b1dc-2661fea6a740/Overview-of-overlapping-clinical-disease-manifestation-of-DYNC1H1-associated-disorders.png Research Updates - Major Publication: Moller et al, 2024 - Make it stand out The now-outdated triple venn diagram published in 2020 that attempted to detail the overlap of symptoms in DAND patients. https://www.dync1h1.org/research-updates/diagnostic1 monthly 0.5 2024-07-15 https://images.squarespace-cdn.com/content/v1/64877ecf563f880601a934cc/a413d5fb-73bd-42aa-af72-796bd99989fa/dand+symptoms+Juen+2024+%281%29.png Research Updates - Unraveling 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