Founder, JB’s Keys to DMD
I have two children Caroline (14) and JB (12). JB is living with DMD. Caroline is living with being a 14-year old girl. JB was also diagnosed around Christmas time 11 years ago at 16 months old. We live outside of Boston. JB loves being outside and especially likes skiing and sailing! I founded JB’s Keys to DMD close to JB’s 2nd Birthday In the 10 years we have been running we have raised over $3 million to improve the quality of life and care of people living with DMD.
Sarah and Bryant Krieger
Founders, Fritz and Friends
We are the Krieger Family from Phoenix AZ. My name is Sarah, my husband is Bryant, and we have 4 kiddos; Hans (7), Otto (6), Fritz (4), Ingrid (18mo). I am a former elementary teacher, who now homeschools our kiddos. Bryant works as a Data Analyst at Truckstop.com.
Our family loves traveling and exploring new places, even if that means our own backyard. In our spare time you can find us outdoors! We love hiking, bike riding, playing all sports, swimming, skateboarding, planting and gardening, and ultimately anything we can do together as a family.
In 2016 our son Fritz was diagnosed with Duchenne at just 10 months old. In the midst of wrestling with such news, and taking time to grieve the harsh reality that our life was going to look different from anything we could have ever imagined, our family started to realize that despite a muscle wasting disease; we can be strong, and Fritz can be strong, because STRENGTH IS MORE THAN MUSCLE. That phrase has become our battle cry, and we desire to share that message with the world.
One way we share our perspective of strength is through our small non-profit, Fritz&Friends. Over the past 2 years we have partnered with a variety of people and businesses to help raise funds for Duchenne Research, and we are honored to now do the same with Cure Rare Disease. We also own a Barbershop, called Fritz’s Barbershop that partners with our nonprofit to help give strength to Duchenne!
Before Duchenne entered our life, we had always preached to our kiddos; ‘teamwork makes the dream work.’ Years later, we are still finding truth in that idea. We could not be more excited to be an ambassador for Cure Rare Disease and join a team with our same dream. A dream that does not involve making a name for our self but collaborating with others. A dream that does not settle for the current process, but instead pushes to try new things. We dream of nothing short of a cure, and we are excited to a join a team that desires simply that! Strength is more than muscle, Strength is teamwork, strength is Cure Rare Disease.
Sonya and I have been married for 20 yrs. We have 2 sons Jonah, age 16 & Emory, age 13. I own a manufacturing company that I purchased in 2007, one year before my kids were diagnosed with DMD. Sonya is a pediatric nurse and now stays at home to care for our boys. Our boys were diagnosed 1 week before Christmas in 2008 with Duchenne Muscular Dystrophy. We started FightDMD in 2009 with a goal of closing it down because a CURE was found! We’ve raised over $1 million dollars to fund critical research for boys all over the world with DMD.
Tonya and Steve Dreher
Founders, Hope for Gus Foundation
When Gus was born on May 10, 2005, we knew our family was complete. We had been blessed with three beautiful children and even though Gus was five weeks premature, we knew he would eventually catch up.
He was a smart and snuggly baby, late on all of his milestones, but seeming to thrive anyway. When he entered preschool, he started physical therapy to help him “catch up.”
When he was four and a half, his mom, Tonya made an appointment for him to see a neurologist. To this day, she is not exactly sure why she felt compelled to make this appointment. None of the teachers or physical therapists who worked with Gus suspected anything out of the ordinary. Perhaps she just had a feeling…
That appointment spiraled into three weeks of testing, fearing the worst, and dreading the unknown. By the time his diagnosis of Duchenne Muscular Dystrophy was confirmed, we knew it was the worst possible outcome for our son.
After the tears and shock, we started researching. What we found, was that there were numerous potential treatments and maybe cures out there, but they weren’t being funded. DMD is what is often called an Orphan Disease, meaning, “a disease that has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.”
This prompted us to immediately begin the process of starting our own foundation to raise money and fund research. We have been running the Hope for Gus Foundation for 9 years.
We live in Peterborough NH – Gus’ dad, Steve, is an English teacher and his mom runs the foundation and also has her own small business. Gus is now 14 and a half and recently just started using a power wheelchair for school. He is a fairly normal 8th grader and does well in school. He loves to read and draw and play with his dogs. He looks up to his 16 yr old brother, Abe and his 18 yr old sister, Isabel and loves to spend time with them as much as he loves to drive them crazy!
As a family, we are thrilled to be collaborating with Cure Rare Disease and see it as an amazing opportunity to push the science further and make a real difference. We truly believe that we are stronger TOGETHER!