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.

Vincent Lamendola

Vincent Lamendola

Vice President

With a strong sales and marketing background in healthcare, Mr. Lamendola serves as JAR of Hope’s Vice President. He possesses the knowhow to drive messaging across various platforms while garnering the needed funding to support ongoing research.

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.

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.

Nicole Santostefano, MS OTR/L

Nicole Santostefano, MS OTR/L

Nicole is a licensed pediatric occupational therapist with two years of clinical experience, as well as an active clinical instructor and a board member. She specializes in evaluation and treatment of children with developmental and neuromuscular disabilities. Nicole works as director of training at a cognitive learning center to help students of all abilities increase their cognitive skills and to reach their fullest potential in academics and in life.

Roni Pluskalowski, PT

Roni Pluskalowski, PT

Roni is a licensed physical therapist with 37 years of clinical experience. She specializes in the evaluation and treatment of infants and children with neurodevelopmental, neuromuscular, orthopedic, and muscular disabilities. She has presented at various professional conferences and is an active clinical instructor.

Race Committee

Dave Ferber

Committee Chair

Matt LeBow

Race Coordinator

John Avalone

Committee Member

Joe Ippolito

Committee Member

Anthony Kapasakis

Committee Member