The initial reaction to receiving any life-altering diagnosis is usually grief. It takes time to process the information, and as it begins to settle in, the life that was once planned no longer seems attainable. It usually takes a strong support system and a couple of milestones for parents to realize the diagnosis probably isn’t as bad as statistics say it will be.
Dana Capobianco received the diagnosis when sweet Ella was just 4 weeks old. Dana and her husband, Frank, not only had Ella’s future, but also their 5-year-old, Giuliana’s future to consider. Dana immediately turned any grieving sentiment into constructivism; she needed to be in control of her family’s future. She needed to make sure that Ella has the same opportunities as her older sister! She wanted to fight for Ella’s future and independence!
In 2012 Dana chose to fundraise for FPWR because of the positive message of hope it provides for families. Dana thought of the future, and felt research IS the future. That fall, she ran a half-marathon and used a One SMALL Step virtual fundraising page to raise over $20,000, becoming one of the top fundraisers in New York! Early fundraising success only led to Dana becoming more involved with FPWR. In her second year, she hosted her first One SMALL Step walk raising over $100,000 and earned the privilege of hosting the 2014 FPWR Research conference in her city.
Dana is one of FPWR’s most committed volunteers! Not only is she our One SMALL Step shirt coordinator, she is also involved on the One SMALL Step Development Committee, New Parent Committee, Communications Committee, and the NYC Gala Planning Committee! She works closely with Susan Hedstrom and other volunteers to help with as many projects as possible. Dana is playing an instrumental role in the preparations for the annual research conference, taking place in Garden City, NY this November. She is also helping plan the NYC Gala taking place the Thursday before the conference. It’s going to be an unforgettable weekend in the city that never sleeps! Mingle with other families fighting the same battle, recuperate for a day, and then join us for yet another informative conference with an impressive panel of presenters, followed by a full day of discussion on clinical trials. Dana says this will be an exciting conference because of all the promising treatment options and ideas that our amazing researchers are working on.
On that note, Dana’s message to parents, particularly the new ones is, “be hopeful and positive, and educate yourself. Love your baby and enjoy every single moment. Get involved in any way – big or small – because it will give you some sort of control over something uncontrollable, and you will become part of the solution. You have been blessed to become part of the most passionate, inspirational, kind, and driven group of parents that I have ever met in my entire life. There is no doubt in my mind that, because of these people, we will find treatments, and our children will live full and independent lives!”
Written By Yinna Ng