Dup15q Alliance

While we were walking, The Dup15q Run for a Reason Team is running! 👟 These six amazing charity runners will take on the TCS NYC Marathon, which runs 26.2 miles through the five boroughs of NYC, as they raise funds to support the Dup15q Alliance and our Mission! You can help support any of our dedicated runners by making a gift, and motivating them to Run for a Reason this Sunday in the 2024 TCS NYC Marathon! Make a gift here: https://lnkd.in/gQjwwGXn #believe #idic15 #Dup15q #Chromosome15 #charityfundraiser #tcsnycmarathon #runforareason #15q

Our Chromosome 15 and Related Disorders Clinic is recognized as a center of excellence in Angelman syndrome and Dup15q by the Angelman Syndrome Foundation and the Dup15q Alliance. Led by Dr. Diana Walleigh, the clinic is only one of 40 institutions worldwide able to treat these patients, and just one of three to receive this designation. https://lnkd.in/g7CFrRMe

A Special THANK YOU to our Believe Walk Hosts and Team Fundraisers! YOU make our work possible. We were so excited to have our Believe Walks returned this year with over $203,000 raised, just incredible! Any Fundraising Team part of the Top 3 Fundraising Believe Walks will be entered to win one of four SAMi Alert Monitors! Winners will be drawn randomly and announced tomorrow!! Thank you to our Sponsors at SAMi. www.samialert.com 

✨ Save the Date! Details coming soon.

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.