by SADS Foundation | May 23, 2024 | Blog
Adeline was diagnosed the day after birth with Long QT Syndrome Type 2. Now, Adeline is one of ten Children’s Miracle Network National Champions, and is sharing her LQTS story on a Cheerios box in Costco throughout the month of May. “Adeline was born a healthy,...
by Erinsads | May 15, 2024 | Blog
written by Melissa If you’re anything like me, hearing the term “clinical trial” generates some conflicting reactions. There’s excitement over the possibility of a game-changing treatment on the horizon, and at the same time, there’s some fear in the idea of...
by SADS Foundation | Apr 9, 2024 | Blog
Nicole was diagnosed with Long QT Syndrome Type 1 at birth. Today, she’s in her last semester of medical school – and hopes to help others with rare diseases and disabilities access the support and expert medical care she received as a child with a SADS condition....
by Erinsads | Mar 29, 2024 | Blog
In June 2024, the SADS Foundation is bringing the LQTS and CPVT patient communities together for an FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). This meeting gives the FDA and other key stakeholders — including researchers, biopharma...
by Erinsads | Feb 26, 2024 | Blog
When Miranda was eighteen, she learned that her health issues could potentially have been inherited from her biological father – who was a sperm donor. Diagnosed at 31 with Long QT Syndrome, Miranda is now on a mission to try and help others who had the same donor get...
