"At the end of the day, love and compassion will win." ~ Terry Waite
"Every time you smile at someone, it is an action of love, a gift to that person, a beautiful thing"
~ Mother Teresa
Look at this little face with the giant smile. Conner has the kind of smile that lights up any room and brings joy to everyone he meets. Beneath this beaming smile is an immensely brave little boy who is quite literally in a fight for his life.
Conner has Duchenne Muscular Dystrophy (Duchenne), a rare and fatal genetic disorder affecting all muscles of the body. This terrible disorder makes muscles so weak that it takes away the ability of a child to walk, to hug, to hold hands, and eventually even robs them of their smile.
Conner’s giant smile has been the constant from the time he was born. Whether playing with his brothers in the snow or sand, exploring the world, or even more recently, through clinical trials, MRIs and constant poking and prodding…always that smile. When his friends or brothers run around outside and he needs to watch and wait, still that smile. As Conner’s mother Jess explains it, “I will always carry him, always fight for him and take care of him, but I cannot smile for him.”
The Diagnosis & Living with Duchenne
Conner lives in Ridgefield, CT with his loving parents, Chris and Jessica, twin brother Kyle and younger brother William.
The Duchenne diagnosis shattered the Currans and brought them to their knees. As parents, they would have traded places with Conner in a heartbeat to save him from the pain that would certainly come if no cure is found. Any thoughts of a typical childhood for Conner vanished. There would be no soccer, no basketball, no baseball, no lacrosse... but really, the sports mean nothing. Walking at the age of 12 means something.
Somehow Chris and Jess found the inner strength to take action. They decided that they must do absolutely everything in their power to advocate for Conner and to help raise funds to change the course of this disease for all of the children affected.
Kindness Over Muscular Dystrophy, Inc. is a 501 (c)(3) organization with a mission to provide charitable giving to support Muscular Dystrophy research as well as benevolent assistance and advocacy to those in need.
There have been great strides on the research front and Conner is participating in a mini-dystrophin gene therapy trial with Pfizer. We are happy to report that he has some improved muscle function – remarkable since the norm is consistent, steady decline.
There is hope and that’s what our mission encompasses.
We started our journey as parents with family and friends, raising over $800,000.00 for 501 (c)(3) Duchenne charity causes. After several years of raising funds for other nonprofits, we felt a calling to expand our vision to form Kindness Over Muscular Dystrophy into a 501 (c)(3).
Funding research is our primary mission because those research dollars have the potential to generate a desperately needed cure for Duchenne. Kindness Over Muscular Dystrophy will support and fund key innovative research projects that show promise in the laboratory. Every kid with Duchenne has a hope that a cure is out there, and we mean to keep that hope alive with KOMD funded research dollars.
The benevolent assistance facet of our mission includes raising funds to help families purchase vital medical and accessibility equipment such as power wheelchairs, rotating beds, chair lifts, scooters and accessible vans. Health Insurance often does not provide adequate coverage for all the equipment a severely disabled person with a muscle-wasting disease requires. Without this equipment, Duchenne patients are often isolated and unable to attend many activities we all take for granted. The emotional toll is enormous.
Advocacy is the third facet and an extremely important part of Kindness Over Muscular Dystrophy’s mission. We attend yearly advocacy conferences in Washington DC and meet with our Senators and Congressman. They come to realize and appreciate the human face behind the rare disease. They learn about the struggles rare disease patients face from delays in diagnosis to lack of available treatments. We raise awareness with our representatives on a national level because government funding of rare disease is essential. Most importantly, we get to personally participate in this great democracy of ours and we can let our representatives know how health care laws impact our family and our Duchenne community. Senator Blumenthal has been a Duchenne champion and used Conner’s story and picture in front of the Senate to illustrate how important it is to safeguard the pre-exiting provisions of the Affordable HealthCare Act.