"At the end of the day, love and compassion will win." ~ Terry Waite
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.
In the past year, 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 funds for Parent Project Muscular Dystrophy, a 501(c)(3) organization to donate towards research. We raised over $800,000.00 for PPMD in five years through various events we hosted throughout the years. However, recently, we felt compelled to expand our mission to include assisting those Duchenne patients in desperate need.
We plan to continue to donate to research, including specific projects through Parent Project Muscular Dystrophy, as they are the leaders in identifying exciting new DMD research areas.
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.