by Jasmine Wylie | Feb 28, 2019 | Advocacy, Rare Disease, Timothy Syndrome
February 28th is Rare Disease Day. The main objective is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. While all SADS conditions are considered rare diseases, we want to focus on...
by Kennedy Cooper | Nov 8, 2018 | Advocacy, Grief and Loss, Sudden Cardiac Arrest
When you’re six years old, the world is your oyster and your imagination is taller than you are. Nothing bad could ever happen because the toxic realities of life far surpasses our level of comprehension at such a young age. I always found comfort in the...
by Kellie Moore | Apr 13, 2018 | Advocacy, Fundraising, Long QT Syndrome, Parenting, Timothy Syndrome
Fundraisers don’t have to be big or expensive to make a difference—they can be as simple as having people over for milk and cookies. That’s something Mary Ann Ciciarelli knows to be true. For the past seven years, her family has hosted a milk-and-cookies fundraiser in...
by Deb Thibodeau | Feb 14, 2018 | Advocacy, HCM, Long QT Syndrome, Parenting, Sudden Cardiac Arrest
My heart breaks every time that I hear of a child dying suddenly from an undetected heart condition. How does one recover from knowing that if a diagnosis was made, their child may be with them today? I don’t have that answer, but unbelievably found myself...
