Revving Up Support
Tags: auction, building, Carrie Bogumil of Pride Mobility, Destinee Deely, Don Brominski of UGI Utilities, experience, Geisinger MDA Clinic, local, love, MDA, MDA Black & Blue Ball, Mohegan Sun Pocono, Noah Sienkiewicz, support, time
MDA Black & Blue Ball
On April 28, Mohegan Sun Pocono once again hosts the Annual Black and Blue Ball. The annual event is the largest fundraiser for the Muscular Dystrophy Association (MDA), building awareness and support for individuals diagnosed with neuromuscular diseases.
Each year, the Black and Blue Ball features silent and live auctions to raise funds for MDA initiatives, such as the Geisinger MDA Clinic. This year, organizers hope to raise $125,000. Funds will be used to assist local families with muscle-wasting diseases, especially through a local medical equipment loan closet, as well as research efforts to find additional treatments and cures. A camper auction raises money to allow children with Muscular Dystrophy to attend a week-long summer camp alongside other children with similar diagnosis.
This year’s event will include food and beverages provided by Mohegan Sun, entertainment by local band Into the Spin, a motorcycle display from Rommel Harley Davidson and unique auction items. One lucky raffle winner will take home the “Tower of Cheer” filled with an assortment of beer, wine and liquor. Other items featured in the auctions include $1,500 in gas cards and a 16-person New York Yankees suite. This year’s auctions will also feature a Golden Ticket auction where attendees can purchase chocolate bars that may contain a “Golden Ticket.” The ticket allows the winner to choose any live auction item.
Long-time MDA supporters will be recognized during the ball. Don Brominski of UGI Utilities is this year’s honoree and the Wings of Life Honoree is Carrie Bogumil of Pride Mobility, who was nominated due to her dedication to the event each and every year.
According to Destinee Deely, MDA director of Business Development, MDA’s many services would not be possible without fundraising events like this. “All of the funds support our local families and we could not do it without the support of Northeast Pennsylvania,” she said. Visit www.mdanepa.org. –Ashley Price
Overcoming Challenges while Encouraging Creativity
Noah Sienkiewicz is a typical 9-year-old boy who loves to build and create. He enjoys playing with Legos, drawing, doing crafts and recently visited Legoland in Florida with the Make-A-Wish Foundation. The only difference between Noah and his classmates, is that he was diagnosed with Duchenne Muscular Dystrophy (DMD) at 9-months-old.
Duchenne Muscular Dystrophy is a progressive, fatal muscle wasting disease that eventually affects every muscle including the heart and lungs. DMD is one of the 40-plus forms of Muscular Dystrophy (MD) supported by the Muscular Dystrophy Association (MDA). Though Noah is a bright, creative kid, he faces many challenges that his classmates will never experience. He is able to get around at school and keep up with his classmates with the help of a scooter. At home, though, the scooter is large and cumbersome, so he recently received a new power chair. While he plans on easing into using the chair full time, it will eventually allow him to be much more independent, especially at home.
Noah’s mom, Amy, shared that, while Noah is excited for his new power chair and the opportunities it will provide, he understands that he will soon be confined to it. “This is a very difficult time for him, and although he is excited about the chair and its amazing features that will make him as independent as possible, no 9-year-old boy wants to get a power chair that he knows he will soon be confined to,” she added. The Sienkiewicz family will also be moving into a bigger home soon, complete with a ramp, bedroom on the first floor and a fully handicapped accessible bathroom.
When asked about the daily struggles facing their family, Amy shared that some of the most difficult moments occur when Noah wants to play with his three younger siblings, Josiah, 6, Bethany, 4, and Eli, 2. Amy explained that playtime is often a challenge, especially in outdoor situations like playing in the snow. “Of course kids love to play in the snow, but it is nearly impossible for Noah. Once his muscles quit on us it is difficult to get him back up…and then he is done for the day, which is sad because his 6-year-old brother loves playing with him.” Though Noah and his family face many struggles, they have been able to connect with other families facing the same challenges. “We connected with the MDA shortly after we received the diagnosis. They have been wonderful along the way,” shared Amy. “The most important thing to us is the fact that they are continually funding research to find cures for neuromuscular diseases.” Through MDA fundraising, Noah has had the opportunity to attend the MDA Summer Camp for the past three years. “They make all activities accessible for all kids– no matter their weaknesses. They just love being with kids that are just like them. It is a truly wonderful experience,” said Amy.
While Noah may have a difficult road ahead, he and his family stay confident that his future will be filled with greatness. “He loves math and science, working with numbers and, of course, building and drawing. He would love to be an engineer working for Disney or Legoland,” explained Amy. Visit www.mdanepa.org.