Leave the Cocktail Dress at Home – You Can Attend This Fundraiser in Your Pajamas!
The inaugural Hope Flies Sebastien’s Smiles event, a fundraiser for the Foundation for Mitochondrial Medicine, was held in October 2012 at the Tampa Yacht and Country Club and raised $35,000 for the Foundation. The event was held to honor of 13-year-old Sebastien Setin who has mitochondrial disease. Sebastien is the oldest child of Sandra and Christophe Setin of Tampa.
For 2013, we are holding a virtual Hope Flies Sebastien’s Smiles to show our support for Sebastien and the Setin Family. With a virtual fundraiser, you have the pleasure of showing your support for the cause without having to get dressed in your cocktail attire. Between November 1, 2013 and December 31, 2013, supporters can secure sponsorships and make donations on line and save the dry cleaning bill for next time. The website for the virtual fundraiser is www.mitochondrialdiseases.org/hope-flies-sebastiens-smiles.
“We were really inspired by the support for our event last year,” said Sandra Setin. “The community really embraced our cause, especially the Tampa Yacht and Country Club where Christophe is chef. We still need more awareness about mitochondrial disease and for everyone to understand the importance of the role mitochondria play in our health and how it impacts the patients affected by mitochondrial disorders.” Chef Christophe has also created Provencal Spice Rub – a savory blend of 17 individual spices from his native Provence, France – and is donating a portion of the proceeds of all sales to the Foundation. The Provencal Spice Rub is available at www.chefjeanchristophe.com and at Tampa-area Fresh Market stores.
According to Sandra, Sebastien loves to do things a typical 13-year-old boy enjoys, such as playing video games, watching sports on TV and until last year, playing baseball.
“He does all of these things despite the fact that his mitochondria don’t make enough energy for him to function normally. He works hard and makes it through the day, but it’s heartbreaking to see him struggle. This disease really takes a toll and there is a real sense of urgency.” said Sandra.
According to Laura Stanley, executive director for the Foundation for Mitochondrial Medicine, “1 in 2,500 people are affected with mitochondrial disease, and that number increases dramatically if you factor other mitochondria-related diseases including autism, Alzheimer’s or Parkinson’s disease. Mitochondrial disease is difficult to diagnose and no patient, doctor or researcher can beat the disease alone. It will take dedication of many to help the children and adults with mitochondrial disease.”
The Foundation’s mission is to support and accelerate the development of the most promising mitochondrial disease research and treatments of the many forms of mitochondrial disease. To donate to Hope Flies Sebastien’s Smiles, please visit www.mitochondrialdiseases.org/hope-flies-sebastiens-smiles and for more information about the Foundation please go to www.mitochondrialdiseases.org.