Kindness Over Muscular Dystrophy #KOMD For Conner
What is our Mission?
Our mission statement is so simple – a CURE for Conner and the thousands of other boys with Duchenne muscular dystrophy (Duchenne).
The reality of it is this – those words are so much more than a mission statement – this is our dream, our hope and our prayer! And…. no matter how simple the words are - the fact remains that A REAL CURE is just not possible without your help.
Kindness Over Muscular Dystrophy – our name says it all - because without your kindness, support and love we just can’t accomplish our precious mission to save our son’s life in time.
We are grateful to each and everyone of you and we thank you for the bottom of our hearts because each day that you are there for us, we get that much closer to actualizing our dream.
We believe in the power of kindness
And so do YOU and we love you for it!
What is Duchenne muscular dystrophy?
The following are the words we heard when we asked, “so…what exactly is Duchenne muscular dystrophy (Duchenne)?”
This diagnosis shattered our world and brought us to our knees. Then we were truly blessed by your kindness! You lifted us up, encouraged us and supported our every effort to save our son. Because of your efforts we have raised over $400,000.00. We are overwhelmed by your kindness and so inspired!!
How did the Partnership with PPMD Come About?
We were at a loss when we first got the diagnosis. We felt alone and overwhelmed with questions on how we were going to deal with this disease from a medical, emotional and practical perspective. Luckily, through the grace of God, we were directed to Parent Project Muscular Dystrophy (PPMD). We attended our first PPMD Connect Conference where we were able to learn about the latest Duchenne research, meet the Scientists, get advice from other caring Duchenne parents and get answers to many of our pressing questions. Parent Project Muscular Dystrophy has the most dedicated staff of workers who took us under their wings and somehow managed to calm our minds and energize our spirits. We loved the fact that PPMD has connections with and supports the most innovative researchers in the muscular dystrophy field. Because of our special connection to the PPMD family, we decided to join forces and raise much need research dollars.
How did your donation help?
KOMD has donated to PPMD’s fund to support research at the Center for Gene Therapy with Dr. Jerry Mendell. PPMD Awards Nationwide Children’s Hospital $2.2 million. He is developing a gene therapy trial for boys 0 to 3 years of age that uses a harmless virus to replace and correct the malfunctioning genes in the boys. We are so hopeful that his research will be successful and those little ones will have a great quality of life! CRISPR/Cas9 gene-editing research is another area that KOMD has donated to – this one is a game changer – it could potentially stop Duchenne progression. No human trials are currently in the works but we are hopeful that this research will lead to trials and a permanent cure. PPMD Seizing This Moment to Explore the Potential of CRISPR/Cas9 in Duchenne. We believe the future for Duchenne patients may involve combination therapies like those that were so successful in fighting AIDS so KOMD has also invested in research to evaluate this premise. Lee Sweeney, Ph.D., The University of Florida. The latest researcher that KOMD has sponsored is Dr. Kevin Flannigan of Nationwide Children's Hospital in Columbus OH who is studying GALGT2 therapy. This is a promising new gene therapy that has the potential of treating all those with Duchenne regardless of mutuation.
What trial is Conner participating in?
We are continually searching for trials that we feel would be safe for Conner to participate in, would be beneficial for him and he would qualify for. We welcome prayers that God will lead us to the trial that is right for Conner!
We believe the cure is out there for Conner and we desperately need your help to fund promising research in order to find that cure for him and so many others!
Lets get this done in time!
Thank you one and all for your incredible kindness!