The Breslow family of Cherry Hill is organizing the event, which will take place on Thursday, Nov. 15 at Woodcrest Country Club.
A Cherry Hill family brought mitochondrial disease awareness to the forefront of the community two years ago.
Sydney Breslow, a Cherry Hill native who was diagnosed with a mitochondrial disease at the age of 8, and her family organized the first event for Cousins for a Cure in 2016. The event was a huge success, raising approximately $200,000 for the United Mitochondrial Disease Foundation’s Logan Sloane Aronson Research Fund in honor of Sydney.
Two years later, the Breslows and numerous community volunteers are hard at work preparing for the second Cousins for a Cure event. The 2018 edition of the fundraiser is scheduled for Thursday, Nov. 15, from 6 to 9:30 p.m. at Woodcrest Country Club in Cherry Hill.
A lot has happened with Sydney, the Breslow family and mitochondrial disease research over the past two years. As defined by the UMDF on its website, mitochondrial disease comes from the failure of mitochondria, specialized compartments within cells that produce more than 90 percent of the body’s energy needed to sustain life and support organ function. The disease affects individuals differently depending on the gene mutation and can cause a variety of symptoms There are currently between 1,000 and 4,000 children born each year with a mitochondrial disease, and there is currently no cure.
Sydney’s mitochondrial disease affects her neurologically and causes her to have issues with balance, vision, speech and walking. At the time of the first Cousins for a Cure event, there were no other documented cases of other patients with the same specific gene mutation Sydney has.
Shortly after the fundraiser, in December of 2016, a peer review paper was published identifying seven other patients with the same gene mutation as in Sydney’s genetic testing. More patients have since been diagnosed with the same mutation, and, today, Sydney is one of 14 people in the world with MEPAN.
Sydney’s mother, Sherri Breslow, said the paper was a huge step forward toward discovering treatments and a cure for the mitochondrial disease. She credited advances in genetic research over the past few years with helping with the identification of the gene mutation in patients.
“We’re hoping we can get focused on trying to see exactly what the gene does and see if we can find a cure,” Sherri said. “Now that we know a gene, let’s find a cure.”
Sydney has had many successes in her life over the past two years. Last December, she graduated from High Point University with a master’s degree in special education with a concentration in intellectual disabilities. She is currently living in Raleigh, N.C., and is working for Alliance for Disability Advocates, where she helps people with disabilities learn how to live independently.
In addition, Sydney is writing about her experiences and detailing what life is like with a mitochondrial disease. She has started a blog entitled “I Am…So Much More Than You See” and writes posts about some of her life experiences. Her blog can be read at http://iamsomuchmorethanyouc.blogspot.com.
“It gives people who don’t have disabilities a perspective they’d never think about,” Sherri said about Sydney’s blog.
All of the money raised through Cousins for a Cure is donated to the Logan Sloane Aronson Research Fund for Mitochondrial Disease in honor of Sydney Breslow. The fund is named after Sydney’s cousin, Logan Aronson, who passed away in a car accident in North Carolina in 2013. Logan’s parents, Debra and Ron, requested a research fund be established with UMDF following Logan’s death. All of the proceeds from Cousins for a Cure go directly into the fund and helps to fund mitochondrial disease research.
The Breslow family will be recognized for their fundraising efforts at this year’s event. Cherry Hill Mayor Chuck Cahn is planning to present the family with a proclamation.
“The Breslow Family has been extremely passionate when it comes to working towards raising awareness for such a debilitating and devastating disease,” Cahn said. “Their hard work and commitment to the United Mitochondrial Disease Foundation is inspiring and we hope by recognizing their efforts — we can help spread awareness within our community.”
Cousins for a Cure will also include dinner as well as a silent and live auction. Numerous gifts are being donated to auction off at the event. Some of the auction items include trips, tickets to local Philadelphia sports games, restaurant packages, and more. The Breslows are hoping to raise another $200,000 at this year’s event.
Cousins for a Cure is also about raising awareness. A video will be presented about mitochondrial disease and will focus specifically on MEPAN. Educating the community is a big goal of the event.
“As much as is it’s raising funds, it’s important to raise awareness too,“ Sherri said.
Tickets for Cousins for a Cure are $150 per person. To purchase tickets, visit www.umdf.org/cousinsforacure18. Anyone interested in being a sponsor for the event can make a donation by visiting www.classy.org/give/185192/#!/donation/checkout.