About

Our Mission

JAR of Hope's mission is dedicated to bringing awareness and raising funds directed to ongoing research in the hope of eliminating Duchenne Muscular Dystrophy.

What is DMD?

Duchenne Muscular Dystrophy (DMD) affects about 300,000 boys worldwide, with approximately 20,000 cases in the United States.

DMD is a form of muscular dystrophy that is caused by a mutation of the dystrophin gene—located on the X chromosome—which codes for the protein dystrophin. The absence of dystrophin in the body causes muscles to deteriorate and break down. DMD is the most frequently occurring and one of the most rapidly progressive childhood neuromuscular disorders. Due to the way DMD is inherited, boys are primarily affected.

In Duchenne Muscular Dystrophy, the child’s exons (sections of DNA that code for the protein dystrophin) are deleted, duplicated, or cause an abrupt stop in the protein production process. The impaired exons then interfere with the rest of the gene being pieced together, which results in a mutation that causes the body to lack the protein needed to protect and rebuild muscle fibers. This leads to continuous muscle degeneration and premature death. Read more about DMD on duchenne,com

DMD has many variations, which makes finding a cure extremely challenging. JAR of Hope's mission is dedicated to bringing awareness and raising funds directed to finding a cure.

"Go home, love your son, there is nothing we can do for him."

It was September 13, 2013 when Jim and Karen Raffone received the news that no parent should ever get– they were told that their child was sick. On that day, their now 7-year-old son, Jamesy, was diagnosed with Duchenne Muscular Dystrophy (DMD): a rare mutation of the dystrophin gene that results in severe muscle degeneration.

The Raffone’s then sought a number of professional opinions, only to be given the same heartbreaking prognosis from each doctor: “go home and love your son – there is nothing we can do.” Unsatisfied with accepting their child’s death sentence, Jim and Karen set out to reverse the seemingly insurmountable odds against them—this is when JAR of Hope was born.

Spearheaded by Jim Raffone, JAR of Hope is an organization that gives Jamesy and thousands of boys just like him the chance to beat a disease that currently has no cure. Through various funding and awareness campaigns, JAR of Hope remains steadfast in its mission to knockout a disease that has, until now, remained undefeated. With each dollar raised, we will fight to finance the necessary research that could result in enhanced Duchenne treatment. The hope is to cure this horrific illness, and to preserve the innocent smiles of Jamesy and other boys suffering from Duchenne for as long as possible.

Leadership

BOARD OF DIRECTORS

James Raffone

James Raffone

Founder & CEO

Founder of JAR of Hope, Mr. Raffone brings an unwavering resolve that comes with the desire to preserve the life of his young son. He spearheads all JAR of Hope initiatives while running the organization’s day-to-day operations.

Steve Russo

Steve Russo

Treasurer

Mr. Russo coordinates and oversees all of the foundation’s undertakings to ensure that the scope and direction remain in sync with JAR of Hope’s mission.

Howard Klein

Howard Klein

Secretary

A seasoned marketer and president of a prominent healthcare advertising agency, Mr. Klein facilitates JAR of Hope’s integrated campaigns and has been instrumental in helping to create innovative ideas to generate increased funding and awareness.

Ann Marie Earle

Ann Marie Earle

Board Member
Tamer Gouda

Tamer Gouda

Board Member

Tamer is an expert in the field of Resource Development with over 17 years of professional experience with multiple United Ways and his Alma Mater, King’s College. Tamer brings a passion of helping others through inspiring those around him to donate their time and their money to make a difference. Currently, Tamer is the Director Resource Development for United Way of Monmouth and Ocean Counties.

Laurie Wing

Laurie Wing

Publicist

Laurie is the founder of Media News Blast – www.medianewsblast.com. Laurie has been awarded the Moms Choice Award for outstanding Public Relations support. Laurie makes regular appearances on Fox and Friends national as a Consumer Lifestyle Expert and has also secured media placement on Good Morning America, Fox & Friends, Hallmark, The Doctors Show, Live with Kelly and Ryan, The View, The Today Show  and more.

Andrew Cameron

Andrew Cameron

Board Member

SCIENTIFIC BOARD

Dr. Carlo Rago, PhD

Dr. Carlo Rago, PhD

Dr. Rago studied at Johns Hopkins University and specializes in cellular and molecular medicine. He has been instrumental in his research efforts and collaborates with JAR of Hope and other foundations to identify the most viable biomedical research projects for Duchenne Muscular Dystrophy.

Dr. David B. Dornfeld, DO

Dr. David B. Dornfeld, DO

Dr. Dornfeld is a New Jersey-based osteopathic physician who believes in focusing on the person who has a disease or condition, rather than treating the disease the person has. He utilizes hyperbaric oxygen therapies, intravenous nutritional support, natural thyroid and hormone replacement therapies and osteopathic manipulative therapies, among many other modalities to holistically help people achieve quality longevity.

Dr. Michael Hayward, PhD

Dr. Michael Hayward, PhD

Dr. Hayward has 25 years of experience in biomedical research with in vivo systems, and has evaluated phenotypes of over 100 different genetically modified mouse lines and dozens of pre-clinical test therapeutics. He has served as an invited speaker on the prediction of efficacy and toxicity on animal models, and has been interviewed for “Genetic Engineering & Biotechnology News” and the “MIT Technology Review.”

Dr. Antonio D’Esposito, DC

Dr. Antonio D’Esposito, DC

Dr. D’Esposito is a Staten Island, NY-based chiropractor responsible for administering the ongoing ultrasound treatment to Jamesy. The treatment has resulted in alleviating many of the muscle spasms Jamesy suffers from and has improved his overall motor function by 60 percent.

Race Committee

Dave Ferber

Committee Chair

Matt LeBow

Race Coordinator

John Avalone

Committee Member

Joe Ippolito

Committee Member

Anthony Kapasakis

Committee Member