May is National Tuberous Sclerosis Awareness Month.
In an attempt to help find a cure for TSC and bring awareness to Tuberous Sclerosis our family has formed “Team Tiara” for the upcoming TSC’s Step Forward to Find a Cure walk in Long Beach on May 19, 2012.
It is estimated that every twenty minutes a child is born with Tuberous Sclerosis, a genetic disorder that causes tumors to form in vital organs such as the brain, heart, skin, kidneys, eyes and lungs. As most of you know, TSC can cause serious health problems include epilepsy, autism, heart disease, facial disfigurement, kidney failure, lung disease, and even death. Because TSC is the leading genetic cause of epilepsy and autism, every dollar raised to find a cure and better treatments for TSC can also mean a better understanding of epilepsy, autism, and even cancer – diseases that touch most everyone all of us know and love. Throughout our history, the TS Alliance has served as a catalyst – first with the discovery of the tuberous sclerosis complex (TSC) genes; second, the genetic pathway, and third in bringing together the research community for research conferences that have led to the initial clinical trials taking place today. Of the 6,000 rare diseases, only 200 have approved treatment.
Today, the TS Alliance is able to provide its constituents with the most up-to-date information about the disorder while awarding grants for research that will eventually result in a cure. The TS Alliance is the only national health organization in the United States dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected. For more information about the TS Alliance or TSC visit www.tsalliance.org.
Our whole family is very grateful to the TS Alliance for their continued support through out the years. Despite the fact that they are a National Organization, they are a part of our family. We are personally friends with the president and CEO, Kari Luther Rosbeck and several members of the Board of Directors. Everyone at the TS Alliance is amazingly talented, compassionate and truly giving of themselves in helping everyone afflicted with Tuberous Sclerosis. When Tiara was in the hospital last year for 3 months, we received so many calls, Facebook messages and visits from our TS Alliance family. During the Comedy for a Cure Event in New York last year, Kari spoke about Tiara’s struggles with TSC as Tiara was at UCLA Medical Center fighting for her life. She requested the whole audience share a moment of silence in Tiara’s honor. During Tabitha’s graduation from high school, Tiara was still in the hospital so 2 of my friends from the TS Alliance came and took shifts watching over Tiara while I went home for the night to see her graduate and attend the party. At least 15 members of our TS family offered to help, their support was overwhelming.
It is hard to explain how special and important the TS Alliance has become to our family but believe me our life would be so much harder without them. For years I was very involved in raising money for the TS Alliance, but because I have been so wrapped up in caring for Tiara the last few years, I haven’t done much. This year, I am back on the wagon and trying to make a difference because they have done so much for our family and all families dealing with this horrible condition. Please consider supporting the TS Alliance by joining us on our walk on May 19, 2012 or by making a donation. Please visit our Facebook page for more information on how to join us or donate.