FIGHTING TO FIND A CURE FOR DUCHENNE MUSCULAR DYSTROPHY
501(c)(3) Non-Profit Organization
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Our Story
The summer of 2017 was like any other with three small boys, lots of playing, swimming, and play ground time. After an accident sent our middle son, Hunter, then two, to the hospital, many labs and tests were performed on him. While the majority of the tests came back fine, we were told he had elevated liver enzymes, an unexpected finding. Months passed and we continued to follow the liver enzymes with monthly blood draws, but they never went back to normal. Our pediatrician sent us for further evaluation with a liver specialist that ordered more testing searching for the cause of the elevation. Within a few hours, we had a diagnosis, Duchenne Muscular Dystrophy, a progressive, incurable, fatal disease of the muscle. Most boys with the disorder are wheelchair bound by age 12 and lose their life in their 20’s. While we were shocked by the diagnosis, we learned this was a genetic disorder so our two other sons needed to be tested. We soon learned that our youngest son, Noah, then one, also had the disorder and our oldest, Carter, then four, had been luckily spared.
While our hearts were broken, my husband and I researched and learned as much as we could about the disorder. We met other families in the Chicago area that also had sons with Duchenne. What we soon learned there is so much hope in this community that a CURE for this nasty disorder is near. Families, researches, doctors, and Duchenne advocates are working tirelessly to save our boys’ lives. We repeatedly were told, money is what is needed to continue the current trials and get new trials off the ground. We decided we needed to do something.
We started the Small Heroes Foundation for many reasons. We want to contribute what we can to clinical trials. We want to provide families with assistance for uncovered medical equipment to give the Duchenne sons the best life possible. We want to save our sons’ lives. And we need your help. Any donation to our foundation, nothing is too big or small, can help us achieve our goal. Thank you for your support.
Hunter, Age 3, Diagnosed October 2017
HUNTER JAMES
Hunter is the sweetest boy who loves holding hands and giving hugs. He is creative and can play for hours creating stories with his stuffed animals or building spaceships with his blocks.
Noah, Age 2, Diagnosed October 2017
noAH WILLIAM
Noah is the brave risk taker who loves climbing on anything he can find. He looks up to his brothers and is always up for a challenge to keep up. He loves to smile and listen to stories snuggled up with his family.
Carter, Age 5, with his two brothers
CARTER JOSEPH
Carter has an energy an love for life that is infectious. He is a caring brother who always is looking out for his two brothers. He loves to draw and color, giving his art projects as gifts to the special people in his life.
OUR FIGHT
Duchenne Muscular Dystrophy (DMD) is the most common fatal genetic disorder among children. To date, there is no cure or treatment to stop the progression of DMD.
Those with DMD are truly in a race against time as their muscles deteriorate further each day. Please help us put an end to the devastating disorder and donate to help find a cure. A cure we believe is there waiting to be discovered given recent advancements.
OUR TEAM
Contact Us at smallheroesfoundation@gmail.com
Alison M. Joseph, DPM, FACFAS
Alison is the mother of Hunter and Noah and is the founder of Small Heroes Foundation. She is a 2003 graduate of Saint Marys College and 2007 graduate of the Ohio College of Podaitric Medicine (Kent State). After completing her residency at University of Pittsburgh Medical Center, she spent three years as an attending at University Hospital in Newark, New Jersey. Currently she is a Assistant Professor at Rosalin Franklin University as well as a practicing podiatrist at Advocate Condell Medical Center and Vista Hospital outside of Chicago.
William M. Small
William is the father of Hunter and Noah and a founder of Small Heroes Foundation. He is a 2003 graduate of the University of Notre Dame and a 2010 masters graduate of the Tepper School of Business at Carnegie Mellon University. He has spent over ten years managing derivative portfolios at banks, family offices and funds.
Kara M. Joseph, MD
Kara is the aunt of Hunter and Noah and the sister of Alison. She is a 2011 graduate of Saint Marys College and a 2015 graduate of Wright State University with a Doctorate of Medicine. She is currently a third year anesthesia resident at Northwestern University pursuing a pediatric anesthesia fellowship.
Our Mission: Built on Hope
The mission of Small Heroes is to help find a cure for Duchenne Muscular Dystrophy (DMD) by raising awareness of DMD and the effects of the disease, raising funding for the advancement of genetic research and trials, and to help to provide the best current care and assistance available for families in the Duchenne community.
Given both the rarity of the disease, and the rarity of our mutation, it is our responsibility to fund trials and research that directly affect our sons rare mutation.
