HEADLINES

Kindness Over Muscular Dystrophy 3rd Annual Benefit Raises Over $140K, Ridgefield Family Grateful for Community Support

With a crowd of approximately 500 attendees and a message of hope, the Currans raised over $140,000.00 at their 3rd Annual Kindness Over Muscular Dystrophy event to advance research towards a cure for Duchenne Muscular Dystrophy. The Curran family is dedicated to seeking a cure for Duchenne Muscular Dystrophy, a disease their seven-year-old son was diagnosed with at the age of five.

The fundraising event took place on June 9 at Captain Lawrence Brewing Company in Elmsford, NY.

The Currans are extremely grateful to Scott Vaccaro of Captain Lawrence Brewing Co for generously offering his venue again for the third annual KOMD benefit in Elmsford, New York. This event was also kindly sponsored by O’Brien Excavation, Druthers Brewing Company, Fortis Lux Financial, Sports Tech Construction, Milestones for Munchkins, Ack Beverage, Amy Mosley and Partners and Y Design.

The following amazing restaurants and individuals are providing food, beverages, entertainment and ambience:

• Angelo’s Specialties

• Captain Lawrence Brewing Co

• Carriage House

• Chez Lenard Gourmet Hot Dogs

• DJ Mike Ackerley

• Exit 4

• Faith Bible Chapel

• Katie Mae Photography

• Katonah Woods

• Lexington Square Cafe

• Peppinos

• Prime Taco

• Pumphouse Wines

• Tigers Den

• The Cookery

• The Whitlock

• Think Visual NYC

• Tom Pesce Magic

• Quaker Hill Tavern

• Village Social

• What’s Cooking

Conner is an engaging thoughtful young boy who is always ready with a warm bright smile that lights up his face. This smile amazingly remains on his face through numerous blood draws, MRIs and muscle biopsies. Because of Duchenne, Conner has had to endure the emotion struggles of coping with a disease that has limited his abilities to run and play but he has battled through his journey with a courage and inner strength that is an inspiration to his parents and family.

Duchenne Muscular Dystrophy is a progressive muscle wasting disease that primarily affects boys. Currently, most do not survive past early adulthood. As devastating as this diagnosis is, the Currans are full of hope for Conner and so many other DMD children. Scientists are on the cusp of actually finding a cure. Exciting new research and gene therapy clinical trials are currently being conducted that may change the course of this disease forever.

The Currans announced at their event that Conner was the first patient dosed in a Pfizer DMD  gene therapy clinical trial and he has shown improvement in his ability to walk upstairs. Improvement in any physical skill requiring the use of muscle generally never happens in Duchenne. There are detractors out there who say gene-therapy is just a band-aid that will wash out in five years, however, others say this just might be a very effective treatment. The Currans acknowledge that their observations are obviously not a scientific evaluation of the efficacy of DMD gene therapy. They remain hopeful and look forward to the day when Pfizer will release more definitive results including the results of the muscle biopsies.

All of their hope would not be possible without Pfizer and the team they gathered together. Behind every amazing new drug is a brilliant scientist that rarely gets the recognition they deserve. Conner’s clinical trial was made possible by the brilliant minds of Bamboo Therapeutics Research scientists Xiao Xiao, PhD, Jude Samulski, PhD and Juan Li, M.D. who first developed the Adeno-Associated Virus Vector (AAV9) delivery system that is being used by Pfizer and all other mini-dystrophin gene therapy clinical trials currently underway. These amazing scientists also developed a muscle promoter that encourages the AAV9 to attach specifically to muscles. Pfizer used this proprietary muscle promoter in Conner’s trial.

We know these dedicated researchers worked many long hours for 30 plus years and have overcome countless obstacles to finally get to this extraordinary point in time. It must be extremely satisfying for them to see their life’s work come together in such a meaningful way. The Currans hope that this truly is the beginning of a revolution in medicine and are hopeful for the future of all Duchenne patients. They thank these wonderful individuals from the bottom of their hearts for this incredible opportunity for their son.

Jessica and Christopher are humbled and grateful for the support they have received from the Ridgefield and Westchester communities who have gathered together to help them achieve their advocacy and fundraising goals.

To date, Kindness Over Muscular Dystrophy has raised approximately $560,000 and all proceeds have gone to fund research and clinical trials. The Currans have partnered with Parent Project Muscular Dystrophy (PPMD) a 501(c)(3), the largest most comprehensive charity organization focusing on ending Duchenne.

The mission, culture and advocacy of Parent Project Muscular Dystrophy resonated with the Currans from their very first contact with them at the PPMD Annual Conference in 2015. PPMD is dedicated to funding research; advocacy and establishing optimal care practices for all DMD patients. All donations flow directly to Parent Project Muscular Dystrophy and are tax deductible.

Jessica and Christopher are well aware that researchers are making great strides but they are in a race against time and these young boys don’t have a lot of time. They believe the time to act, and act decisively, is now.

The Currans have established a goal of raising $1 million over the next 36 months. Please consider helping them to achieve their goal. To learn more about Duchenne and to contact them visit www.KindnessOverMD.org

Anyone interested in helping to find a cure for this disease can spread kindness and awareness in an effort to help advance research and treatment by using #KOMD and #KindnessOverMD

The mission at KOMD is simple: a cure for Conner and all the children with Duchenne, but those words are so much more than a mission statement – it’s a dream, a hope and a prayer! And no matter how simple the words are the fact remains that a REAL CURE is just not possible without financial help. KOMD --- the names says it all – because without kindness, support and love KOMD cannot accomplish their precious mission. With your help, these kids can get over the finish line to strength and health!

Learn more about PPMD here.

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