Dup15q Alliance

𝐓𝐨𝐝𝐚𝐲 𝐢𝐬 𝐒𝐔𝐃𝐄𝐏 𝐀𝐜𝐭𝐢𝐨𝐧 𝐃𝐚𝐲. It's a crucial time to raise awareness about 𝐒𝐮𝐝𝐝𝐞𝐧 𝐔𝐧𝐞𝐱𝐩𝐞𝐜𝐭𝐞𝐝 𝐃𝐞𝐚𝐭𝐡 𝐢𝐧 𝐄𝐩𝐢𝐥𝐞𝐩𝐬𝐲 (𝐒𝐔𝐃𝐄𝐏). Talking to your doctor about Sudden Unexpected Death in Epilepsy (SUDEP) can be difficult but very important. 𝙔𝙤𝙪 𝙝𝙖𝙫𝙚 𝙩𝙝𝙚 𝙧𝙞𝙜𝙝𝙩 𝙩𝙤 𝙪𝙣𝙙𝙚𝙧𝙨𝙩𝙖𝙣𝙙 𝙩𝙝𝙚 𝙧𝙞𝙨𝙠𝙨 𝙖𝙣𝙙 𝙩𝙖𝙠𝙚 𝙨𝙩𝙚𝙥𝙨 𝙩𝙤 𝙥𝙧𝙤𝙩𝙚𝙘𝙩 𝙮𝙤𝙪𝙧 𝙡𝙤𝙫𝙚𝙙 𝙤𝙣𝙚'𝙨 𝙝𝙚𝙖𝙡𝙩𝙝. Learn how to feel more comfortable discussing this topic with your healthcare team: https://lnkd.in/eNZpue53 #OurRisksOurRights #sudep #epilepsy #seizures

🧬Did all of the genetic components that we shared for World Idic15 Awareness Day have your head swirling? ➡️Check out this 30-minute Genetics 101 video from our 2023 Family Conference. https://lnkd.in/g3FRt9pw #Dup15q #idic15 #Chromosome15 #genetics #geneticdisorder

The Dup15q Alliance and Idic15 Canada are proud to collaborate together in honor of Chromosome 15q11.2-13.1 Duplication Syndrome Awareness Day! (Dup15q syndrome) Together, we are raising awareness about Chromosome 15q11.2-13.1 Duplication Syndrome (Dup15q syndrome) and all of its genetic variants. October 15th has been named Idic15 World Awareness Day. This day was created to bring awareness to Idic15, the first known genetic variation of this syndrome. Over the years, dedicated clinical research and improvements in genetic testing have identified several other variations of the syndrome, including interstitial and mosaic.  Although the names are different, we represent all those affected by Chromosome 15q11.2-13.1 Syndrome (Dup15q syndrome). #Dup15q #Idic15 #interstitial #Mosiac #Idic15Canada 

The SoCal Believe Walk is coming up THIS Saturday, October 5th! ⌛ There is still time to register online or make a gift!! ➡ https://lnkd.in/eB6G9CXA

In the past two months I attended six rare #epilepsy and #neurodevelopmentaldisorder conferences and research round tables. Attached what I learned. #genetics #raredisease #precisonmedicine SCN2A- The FamilieSCN2A Foundation International SCN8A Alliance CACNA1A Foundation Dup15q Alliance Project 8p Foundation

Local to the Indy area? Would love to have you join us for this beautiful event. If your'e not local and interested in supporting Nora and other kiddos with Dup15q, please consider donating through the link provided below. Jjoin us Saturday September 21st for the Indiana Believe Walk & support Nora and her fellow Dup15q family. All ages welcomed! Here’s a link to Nora’s Team to register and / or donate. https://lnkd.in/gaCfj8RC All proceeds go to the Dup15q Alliance.

🌟The Texas, Colorado and Twin Cities Believe Walk had AMAZING Walks this past weekend! Donations can still be made up to 10/20/24! ➡️The Indiana Believe Walk happening THIS WEEKEND! ⭐Any fundraising team in the Top three walks will have a chance to win one of four SAMi Activity Monitors! ➡️Help your nearest walk get a chance to win a SAMi Camera by making a gift or by joining the Believe Walk and fundraising! www.dup15q.org/walk #dup15q #IDIC15 #Chromosome15 #Believe #BelieveWalks

📢Dup15q Research Funding - Closing Soon! 📅Letter of Interest (LOI) Applications are Due Friday, September 20th, 2024 by 8pm ET: https://lnkd.in/dcf6PbhP Team Dup15q Raised over $23,000 for the 2024 Orphan Disease Center Million Dollar Bike Ride. The Orphan Disease Center matched it, dollar for dollar, to support a 1-year pilot grant for new Dup15q research! Making a total of $47,038 in research funds to support work towards a precision therapeutic for Dup15q syndrome. Requests for applications are open now, link in bio! https://lnkd.in/g5tVEraH Special Thanks to Team Egan, Team Rachel and Team Annabel and our virtual riders for their fundraising efforts and for making this grant possible!

Dup15q Research Funding Available! Letter of Interest (LOI) Applications are Due Friday, September 20th, 2024 by 8pm ET: https://lnkd.in/dcf6PbhP Team Dup15q Raised over $23,000 for the 2024 Orphan Disease Center Million Dollar Bike Ride. The Orphan Disease Center matched it, dollar for dollar, to support a 1-year pilot grant for new Dup15q research! Making a total of $47,038 in research funds to support work towards a precision therapeutic for Dup15q syndrome. Requests for applications are open now, link in bio! https://lnkd.in/g5tVEraH Special Thanks to Team Egan, Team Rachel and Team Annabel and our virtual riders for their fundraising efforts and for making this grant possible!

🌟 Deadline Extended to August 31!🌟 Exciting Update for Researchers! We’re extending the Dream Fund $50,000 grant deadline to August 31, 2024. Don’t miss this opportunity to secure funding for your innovative projects! Additionally, stay tuned for the Request for Application for Million Dollar Bike Ride, coming out on August 15, with Letters of Intent due by September 20. We’re aligning these opportunities to make sure you have all the support you need for your research. Keep an eye on your inbox for more details! #Dup15q #DreamFund #ResearchGrants #ScienceOpportunities