On Saturday, May 23 – Jorge and I officially launched WALKING STRONG. What started out as an idea for hosting around 50 people in our home, to announce Walking Strong, turned into a 240 person event at our beautiful St. Sophia Cathedral Cultural Center. Never did I dream, that at the same church I grew up in, was baptized in, was married in, and my children were baptized in, would be where we would gather our friends and family and host an event in order to help save our Alexander. As we kept talking about the launch party, our ideas kept growing flowing, donation and help came flooding in.
The evening had incredible music, food, cocktails by Veev Spirits of course, some beautiful artwork being auctioned from our friends, my Aunt as well as piece from Alexander that went for $1000! The music was coordinated by our talents friends Jill and Stanley Smith – who gathered up some of the finest musicians in town, to play some fabulous standards. Our theme, like our website is red and black as well as lots of candles …to “Light the Path” and red rose petals on black table cloths to enhance the drama of the evening. All the red roses were donated by our generous friend, Foti Defterios and the hundreds of candles in the room were donated by Carolyn and Butch Johnson – my sorority sister, Holly’s parents.
After Jorge and I made our presentation for the mission for Walking Strong – we discussed our support for the Center For Duchenne Muscular Dystrophy as well as Dr. Kevin Flanigan’s research project at Nationwide Children’s Hospital. Along with our partnership with the foundation Cure Duchenne, we are support Dr. Flanigan’s genetic therapy that benefits Alexander’s exact genetic mutation – Duplication of Exon 2. We debuted our video telling our family’s story through the voice of Alexander, and there was not a dry eye in the room. The emotional appeal came next led by our own, Vanessa Ambatielos – and then the magic happened. The hands went up holding lighted stars and we raised over double the amount of money we imagined. It finally hit us – what we are doing is significant, and we have reached a room full of people, who before tonight did not truly know the battle of Duchenne. The love, support and energy in the room lifted us up like sails in the wind. We are Blessed.
Chaz Mason – a Stevie Wonder meets John Legend artist- capped off the evening with some inspirational songs including one for our boys “You Are The Sunshine Of My Life.” Then more drinking and dancing….
We are still reeling from our incredible evening, and still feel the love and support from all. We are so grateful to those who helped, attended and are doing what they can to help us keep our boys Walking Strong. We know God’ grace is upon us….
Just wait till the next event….2016!!!