The Curran family of Lewsiboro, NY. Their son Conner (far left) was diagnosed with Duchenne Muscular Dystrophy in 2015. Source lohud. http://www.lohud.com/story/life/food/2017/06/21/captain-lawrence-fundraiser-muscular-dystrophy/408398001/
The family of Chris and Jessica Curran from Lewisboro, a town in Westchester, New York, was filled with joy and love after 400 big hearted contributors flocked at the Brewing Company of Captain Lawrence in Elmsford, New York recently for a big benefit that helped raise $91K for Conner, their son, who lives with Duchenne Muscular Dystrophy, according to an article.
After their son had been told he had Duchenne muscular dystrophy in 2015, the Curran family established Kindness Over Muscular Dystrophy (KOMD), a non-profit foundation with the mission to help Conner get medication and explore possibilities through research to find a cure for the illness. KOMD's mission is to find a cure for their son Conner, as well as many of the other children living with the Duchenne muscular dystrophy disease.
Duchenne muscular dystrophy is a genetic disorder that causes progressive muscle degeneration. Many patients with Duchenne are cramped to a wheelchair at an early age (mostly in their teens), and they sadly don't live beyond their mid to late twenties. Since then, the family made it their mission to raise awareness with the help of their child through funds and benefits. This time, the fundraiser had helped raise funds through a benefit which was filled with amusement, various kinds of foods, and hope for the Curran family.
Conner’s parents emotionally had something to hope for. Since their son was diagnosed with Duchenne, they couldn’t just stand without doing anything. They had to take a step forward for anything that could help Conner with his illness. "We believe there is a miracle out there and it is almost in our grasp. With excellent funding comes excellent research, and then that cure becomes a solid reality not just for Conner but for thousands of others," says Chris Curran.
Who contributed to the event?
Since being at John Jay High School in Cross River, New York, Conner’s parents had known Scott Vacarro, who is the owner of Captain Lawrence Brewery Company. It’s a great time for the family as this was the second annual KOMD Fundraising benefit for Conner. The KOMD event had evening tickets including a dinner, DJ, silent auction, cornhole tournament, a raffle as well as the release of Limited edition #KOMD suds to make the event even more enjoyable.
Many local restaurants had their role to play. They contributed food and time. Several town restaurants and organizations took part in the fundraising. There was Exit 4 Food Hall who offered bokchoy, corn, black beans, avocados, pasta salad and more, Peppino's eponymous chicken from Croton Creek Steakhouse, 251 Lex in Mount Kisco who grilled rotisserie lamb tacos, and not forgetting Purdy's Farmer & the Fish, who served 600 oysters, Village Social's pizza truck making 300 pies, and Willy Nicks of Katonah who served up a mashed potato bar. There were also several others involved in the fundraising.
There were multiple contributors including Richfield businesses Tigers Den, Chez Leonard, and more. These significantly helped to see that fundraising go up to $91K. Captain Lawrence fundraising humbled Conner’s parents for their great generosity and support they had towards the KOMD Foundation. “We want to thank Captain Lawrence, our food vendors, the event planners, the event decorators, our volunteers and all of our supporters from the bottom of our hearts! You are Conner's lifeline and your generosity will be felt by so many that have to endure living with Duchenne,” says Chris Curran.
Moreover, for the rest of the month, there would be a continuous donation from the portion of sales of Captain Lawrence beers toward KOMD. KOMD's dreams, hopes, and prayers are to find a real cure for their son, and the fact is that it’s not possible without your help. With your kindness, support and love, their mission is going to be accomplished so as to save their son’s life in time and actualize their dream. KOMD believes in four things that keep them pushing forward - that is kindness, hope for a cure, and miracles. Conner’s parents were shocked by the diagnosis of Duchenne in their son. It shattered them and brought them to their knees. And the idea to have a foundation to raise money for their son for treatment was conceived. Since then, they have managed to raise more than $230,000.
Partnership with Parent Project Muscular Dystrophy (PPMD)
Conner’s family had great shock during the diagnosis. They were overwhelmed with how they were going to get help and deal with Conner’s disease from an emotional, medical and practical perspective. They felt lonely. And as they revealed, they were guided to PPMD for assistance.
From there, they attended their first PPMD connect conference where they began to learn more about Duchenne and its latest research, get counsel from other Duchenne parents, meet scientists, as well as find solutions to many of their pressing questions. PPMD had the most dedicated staff and workers who helped and managed Conner’s parents from their emotional worries about their beloved child.
Parent Project Muscular Dystrophy has connections and support from many of the innovative and advanced researchers in the muscular dystrophy domain. This is the reason why they chose to join forces together in order to raise money as such research entails spending a lot of dollars. Their collaboration with academic research institutes and industry partners helps PPMD progressively push potential treatments to the clinic faster, which in turn provides access to the Duchenne community like KOMD and patients touched by Duchenne faster.
After joining hands together, KOMD had since donated funds to PPMD to support research at the Center for Gene Therapy with Dr. Jerry Mendell. As a way to support the development of a gene therapy trial for bchildren aged 0 to 3 years old, with the use of a harmless virus to fix malfunctioning genes, PPMD has a grant for a Nationwide Children’s Hospital for $2.2 million. Furthermore, KOMD has also donated to CRISPR/Cas9 gene editing with the hope that it will progress to find a permanent cure for Duchenne. You can also find PPMD other additional funding descriptions in their path to Duchenne research pipeline.
Conner's participation in medicinal research trials
Since research entails safety and qualifications, Conner is undergoing some of the research trials that qualify and are safe for him to participate in as well as look for medications that are beneficial to him. He participates in the MoveDMD Trial of edaslonexent (CAT 1004) which is an investigative medication inhibiting NF-kB in boys who have Duchenne. Boys with Duchenne don't produce enough dystrophin in their muscles which activates NF-Kb.
The trial will determine how much NF-Kb is inhibited by the edaslonexent investigation medication. In his experience with the trial, Conner is doing well and his parents have hope as they anticipate to see benefits soon. Conner is very smart and dreams of being a chef and a pilot. He is curious and likes to know how things work. He loves hide and go seek, Legos, as well as drawing. You too can help push the PPMD research as well as show love to Corner as and thousands of other boys living with Duchenne by donating here.