Fundraiser to Benefit Mito Patient

by Press Release | Sep 28, 2008
Fundraiser to Benefit Mito Patient Joshua Garman is a three-year old Lumberton, New Jersey boy who was diagnosed with Mitochondrial Disease Complex I early in his life. The family of Joshua Garman announced that it will be hosting a fundraising dinner/auction on November 22, 2008 from 6:00 - 9:00pm at the VFW Hall in Mt. Holly, NJ to benefit their son.

Joshua's Mother, Nicole Garman has experienced the painful affects of seeing her child suffer firsthand from this debilitating disease as well as see her family face an increased financial responsibility. According to Mrs. Garman, the community at large is invited to attend the dinner and auction fundraising event.

Mitochondrial disease is an energy metabolism disorder found in approximately 1 in 4000 individuals in the U.S.* The disease affects children as well as adults, and commonly manifests with neuromuscular symptoms such as stroke, muscle pain, extreme fatigue, and organ failure. There are no FDA approved drugs for mitochondrial disease. Symptoms vary widely from patient to patient and in many cases, the disease is inherited.

Joshua was born with Mitochondrial Disease Complex I. This is a life threatening disease with no cure or medication. His cells do not produce enough energy for his body to function properly. He has had developmental delays, seizures, and many other disorders due to this condition. Due to the rarity of the disease, there are few medical professionals who can treat this disease effectively. But, Joshua’s family has found doctors in Houston, TX that will be able to offer treatment. His family is seeking support for the expensive care of this rare disease to keep Joshua healthy.

According to Dr. Kenneth Hirsch, MD FAAP, a former New Jersey pediatrician who has had experience treating nearly 40 children with Mitochondrial Disease during a ten year period, says that there are only a handful of Mitochondrial Disease-oriented medical centers in the U.S.

“In many cases there are not enough doctors who can recognize and/or treat this illness. It is difficult to diagnose and many medical professionals do not have a clear understanding of the disease,” says Hirsch. “This leaves the patient and their family totally helpless. What happens is that the parents end up becoming the primary care providers,” said Hirsch.

“Families affected by mitochondrial disease are not only faced with an uncertain future, but are too often forced to advocate for themselves amidst a sea of doctors, providers, insurance claims, pharmacies, etc.” said Cristy Balcells RN MSN, Executive Director of MitoAction, a non-profit Mitochondrial Disease Action Committee based in Massachusetts. “Awareness initiatives and family support are vital in order to allow these families to pursue quality of life while living with Mito. Mothers like Mrs. Garman are truly pioneers, shaping the future of mitochondrial medicine with their efforts.”

As an avid supporter of Mitochondrial Disease non-profit organizations and research, Nicole is also asking everyone who has been affected by Mitochondrial Disease, whether directly or indirectly or is interested in learning more about the disease to attend this fundraising event.

Tickets are $35.00. This includes dinner, 2 alcoholic beverage vouchers, and 25 raffle tickets. Advance ticket purchase is encouraged. It will be $30.00 for tickets without alcohol vouchers. For those that can not attend, monetary donations to The Joshua Garman Special Needs Trust fund will be accepted.

This "Beef and Beer" fundraising event will take place at the Mt. Holly VFW Post 2692, 199 South Avenue, Mt Holly, NJ 08060.

Ticket orders will be taken through November 22, 2008.

"It will be a joyful and educational fundraising event. We hope people will come and see what a wonderful child Joshua is and learn about the disease, as well as how the disease has touched my son's life and my family's life," Mrs. Garman says. "A little bit will go a long way in helping Joshua with medical bills, transportation to research facilities out of state, and more."

Mrs. Garman added that people who want to participate in this fundraising event will have the opportunity to purchase several quality auction items while supporting a very important cause.

For more information, go to http://www.joshuagarman.blogspot.com, (609) 234-8463 joshuagarmanfund@gmail.com

Other sites to visit regarding Mitochondrial Disease: http://www.umdf.org, http://www.mitoaction.org

*Every 30 minutes a child is born with a Mitochondrial Disease, according to the United Mitochondrial Disease Foundation.

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Author: Press Release

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