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How It All Started: Founding the DYRK1A Community & Organization http://www.dyrk1a.org/main-blog/2017/1/6/scientific-conference monthly 0.5 2017-01-06 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1483735213237-4KW8LZVI9WW9BMJT0XNU/image-asset.jpeg MainBlog - DYRK1A Scientific Conference http://www.dyrk1a.org/main-blog/dyrk1a-family-meetup-2016 monthly 0.5 2016-11-16 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1479326862581-FTRF506ILFRMYVJHVYLF/MeetUp1-1024x517.jpg MainBlog - DYRK1A Family MeetUp 2016 meetup1 http://www.dyrk1a.org/main-blog/rare-common monthly 0.5 2016-11-16 http://www.dyrk1a.org/main-blog/a-unicorn monthly 0.5 2016-11-16 http://www.dyrk1a.org/main-blog/dyrk1a-infographic monthly 0.5 2016-11-16 http://www.dyrk1a.org/main-blog/seizures-in-dyrk1a monthly 0.5 2016-11-16 http://www.dyrk1a.org/main-blog/unique-published-information-leaflet monthly 0.5 2016-11-16 http://www.dyrk1a.org/main-blog/1-of-100-genes-identified-in-autism monthly 0.5 2016-11-16 http://www.dyrk1a.org/main-blog/microcephaly-a-main-feature monthly 0.5 2016-11-16 http://www.dyrk1a.org/main-blog/dyrk1a-mentioned-in-nih-lecture monthly 0.5 2016-11-16 http://www.dyrk1a.org/main-blog/community monthly 0.5 2016-11-16 http://www.dyrk1a.org/main-blog/category/All+Posts monthly 0.5 http://www.dyrk1a.org/main-blog/category/Organization monthly 0.5 http://www.dyrk1a.org/main-blog/category/Support monthly 0.5 http://www.dyrk1a.org/main-blog/category/Awareness monthly 0.5 http://www.dyrk1a.org/main-blog/category/Family+Stories monthly 0.5 http://www.dyrk1a.org/main-blog/category/Research monthly 0.5 http://www.dyrk1a.org/main-blog/category/Information monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Lorna monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Evan+Eichler monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Epilepsy monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Luke monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Ida monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Hannah monthly 0.5 http://www.dyrk1a.org/main-blog/tag/DYRK1A monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Lena monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Microcephaly monthly 0.5 http://www.dyrk1a.org/main-blog/tag/SWAN+USA monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Emily monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Autism+Genetics monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Macklam monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Trotter monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Luna monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Bergtlef monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Intellectual+Disability monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Rare+Disease monthly 0.5 http://www.dyrk1a.org/main-blog/tag/Seizures monthly 0.5 http://www.dyrk1a.org/new-events daily 0.75 2018-12-23 http://www.dyrk1a.org/new-cover-page daily 0.75 2016-08-03 http://www.dyrk1a.org/home-new daily 1.0 2023-04-26 http://www.dyrk1a.org/families daily 0.75 2025-11-15 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/d858499f-934b-4205-b949-b78a2570be88/900+sm+sm.jpg Families A photo collage of many children with DYRK1A Syndrome. http://www.dyrk1a.org/start-here daily 0.75 2025-08-14 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1479334008800-8SYELJ6KG5M0PQFRHKY4/Meetup1.png Start Here The first DRYK1A Meet Up - 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July 2016 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1470412977338-C8AQRZ24G35UNX569OLS/image-asset.jpeg Copy of Start Here https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1470417468240-4XFTX52APFQQDBSDPPAU/image-asset.jpeg Copy of Start Here https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1470417298515-A60CDR1AMMBXT38IS5OE/image-asset.jpeg Copy of Start Here https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1470417580177-AZLDGR7M96586BYOJR78/image-asset.jpeg Copy of Start Here https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1470417545344-QVTISBYGDNTKLUL6E95Y/image-asset.jpeg Copy of Start Here http://www.dyrk1a.org/2018charlotte daily 0.75 2018-10-28 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1532096777366-IMCP426S0P64X558VFXV/HeaderPhoto.jpg 2018-Charlotte Meetup http://www.dyrk1a.org/conferences daily 0.75 2026-02-05 http://www.dyrk1a.org/2018london-meetup daily 0.75 2018-08-06 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1532953970848-6AV7AR6JLDPFRH0XRHYV/WebGroupPhoto.jpg 2018-London Meetup http://www.dyrk1a.org/2019poland-meetup daily 0.75 2019-08-29 http://www.dyrk1a.org/2019seattle-meetup daily 0.75 2019-07-01 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1561924101052-XN8VRYPCCCBX80GAOC3O/65079017_10217932992423763_6021667620711825408_o.jpg 2019-Seattle Meetup https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1561981613547-BEJVY5E6CJYNKVE0ABPS/2019SeattleAlbumCover.jpg 2019-Seattle Meetup View the shared album full of photos https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1561923700805-9RKHIPIFFCWY4DN80NBH/65080346_10217932990623718_8194936113463296000_o.jpg 2019-Seattle Meetup Board of Directors; Ted, Jennifer, Priscilla, Adrianne, Amy, Ashley https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1561928440519-P0SP7VQCQNZHC37RNUBP/snapshot.PNG 2019-Seattle Meetup https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1561923112659-P951EAR661W510CH4U33/20190621_180203.jpg 2019-Seattle Meetup Jenna & Madi with a sibling perspective https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1561928110591-1SSPI3YL4FDAJOAGKCQ9/bernier.jpg 2019-Seattle Meetup Raphael Bernier introducing Rachel Earl https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1561994109410-FBQ4S5LA1BVSQFWODQB3/SocialMediaThankYou.jpg 2019-Seattle Meetup http://www.dyrk1a.org/2019seattle-meetup-1 daily 0.75 2018-12-30 http://www.dyrk1a.org/dsia daily 0.75 2026-03-18 http://www.dyrk1a.org/dsus daily 0.75 2025-08-05 http://www.dyrk1a.org/dsuk daily 0.75 2024-04-25 http://www.dyrk1a.org/rules daily 0.75 2025-01-17 http://www.dyrk1a.org/donate daily 0.75 2025-08-18 http://www.dyrk1a.org/insights1 daily 0.75 2023-01-25 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1615391882855-9PR3E8D8EL3UDMY4DEC6/InsightsHeader.png Insights http://www.dyrk1a.org/chats daily 0.75 2021-06-14 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1615387342262-6KXK9H6PDXHEUZ5NYFCL/ChatHeader.png Chats http://www.dyrk1a.org/awareness daily 0.75 2026-01-28 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1710873799174-0FQ958HJU6NG3WW5VNR4/Awarenessday.png Awareness Day https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1710873812097-91ZQ8N81BYYT6OWGH9K9/1.png Awareness Day https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1710873812149-YV3FH7QC9VL80VUNSO1R/2.png Awareness Day https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1710873812962-C2P4V0ZP4WOOZEQSONWH/3.png Awareness Day https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1710873813110-UFWBB7A8GH08EQDU4POV/4.png Awareness Day https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1710873813781-VKTWX5TW647Q857IB6XS/5.png Awareness Day https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1710873813968-NL5WW2XUD8LLE6X6HVIQ/6.png Awareness Day https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1710873814584-MYV5OKFADIRTZMG09RES/7.png Awareness Day https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/d82b598d-3f29-449c-832b-023a91036927/Dyrk1aSyndromeFrame5.png Awareness Day - 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Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.dyrk1a.org/welcome daily 0.75 2024-04-25 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/6dccbe7d-748c-44c9-b27f-93e635ffdc18/IMG_2974+%28002%29.jpg Welcome - Make it stand out "I felt so alone even though I was surrounded by friends and family who adored Emily and loved our family. I couldn’t seem to shake this overwhelming sense of sadness and loneliness caused by Emily’s diagnosis. I needed this community more than I realized. I needed to be able to cry and have people understand why I felt the way I did. I needed to hear other people say their children had the same victories and struggles that Emily does. I needed to see other kids with DYRK1A to know everything would turn out okay. We are no longer alone, we found our second family." Adrianne Apodaca https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/8db84635-61a2-4612-90b7-4fa6abf3e739/65844083_10217933155747846_4265368773692751872_n+%282%29.jpg Welcome - Make it stand out From the moment Lorna was born I had so many questions and concerns that couldn't be answered. There are no published articles or list of common symptoms when they are undiagnosed. Even after we found her change on the DYRK1A gene in 2014 and 18 years later, there was very little information. I was left speechless when I saw an article with a picture of a girl that resembled my daughter even though their change was different. I'm excited to know families will now have more information when they get a diagnosis" Amy Clugston https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/a88f4ad1-a183-4671-817a-7f209ee35bb1/298291343_10225009705048305_3589841783163501024_n.jpg Welcome - Make it stand out We are eager to learn more about DYRK1A syndrome and help others lead more fulfilled lives. Our way to contribute is providing data, so scientists can help put the pieces together. Luna started her participation in the "Tiger Study" this past April. The data collection is 100% virtual and they are great to accommodate the family and kids time. It is a big time commitment, but the Tiger team broke up some sessions to make sure Luna could participate in full. We can’t wait to see where all the research can take us." Ana Downey http://www.dyrk1a.org/commonquestions daily 0.75 2024-03-19 http://www.dyrk1a.org/2021vitual daily 0.75 2022-08-22 http://www.dyrk1a.org/2022denver daily 0.75 2022-08-23 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/0a14f4af-8074-4fd3-883c-39c989eb302c/Thank+You2022.jpg 2022-Denver-edit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.dyrk1a.org/2022-uk daily 0.75 2022-08-24 http://www.dyrk1a.org/spain daily 0.75 2023-04-27 http://www.dyrk1a.org/advisors daily 0.75 2025-02-01 http://www.dyrk1a.org/2023uk daily 0.75 2024-01-16 http://www.dyrk1a.org/participate daily 0.75 2024-03-22 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1627756491846-8P2AALUCT38WHWZI7LQ2/RareX.jpg Participate - 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/v1/57a2434f15d5db41dd18e8b0/1571078485177-BX68NLY2WYO2HSKT9TZP/Bernier-Lab-LOGO-ideas-1-e1488408835948.png Participate https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1571078440555-3ZVXLS63RU3NPOLPPD4Y/SimonsSearchlight+logo.png Participate https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1520042947367-R1867G99I4EQZD9MSKSD/GenIDA.jpg Participate http://www.dyrk1a.org/published daily 0.75 2024-03-22 http://www.dyrk1a.org/grants daily 0.75 2026-01-27 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/977790f9-6b96-4276-b56e-a66432523166/2024+DYRK1A+Conference49.jpg Grants - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.dyrk1a.org/10years daily 0.75 2025-02-01 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/3b4e40b1-a377-4167-baf5-cad0a3d55d78/DYRK1A+Syndrome+History+Timeline+Infographic_Page_1.jpg 10years - 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/v1/57a2434f15d5db41dd18e8b0/8e0c0a11-25c4-47b7-aced-80e49271f78b/DYRK1A+Syndrome+History+Timeline+Infographic_Page_2.jpg 10years - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.dyrk1a.org/researchreportcard daily 0.75 2025-02-04 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/11b98efd-e996-4df2-b53d-aa147ca69e11/ResearchReportCard1.jpg researchreportcard - 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/v1/57a2434f15d5db41dd18e8b0/00e2a6f1-652f-4ae0-a6b6-323ec1aefd8e/ResearchReportCard3.jpg researchreportcard - 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/v1/57a2434f15d5db41dd18e8b0/aa77397a-92fe-46f0-acf9-e9334575431a/ResearchReportCard2.jpg researchreportcard - 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/v1/57a2434f15d5db41dd18e8b0/c5150c15-912f-47e6-a67f-5be178bd5dbb/ResearchReportCard4.jpg researchreportcard - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.dyrk1a.org/calendar daily 0.75 2026-01-28 http://www.dyrk1a.org/remembrance daily 0.75 2026-01-28 https://images.squarespace-cdn.com/content/v1/57a2434f15d5db41dd18e8b0/1769632138449-DJQ1ZVL8T3W2S21AV54F/RemembranceDay+%281%29.png Remembrance Day