Racing for a Cure! NYC Dad Builds Race Car to Help Find a Cure for Son’s Incurable Brain Disease

“Your son has a life-threatening condition and is going to need emergency brain surgery to manage it.” Those words will be forever etched into Bennett Wilson’s memory. It was the moment he was told his six-month-old son Dean had hydrocephalus, an incurable neurological condition that can only be treated with brain surgery. After learning that Dean would need multiple brain surgeries to manage his condition, Bennett decided to turn his son’s love of race cars into a hydrocephalus fundraising endeavor. So, with the help of his friends, the Brooklyn-based dad converted his family’s minivan into an endurance race car dubbed “Dean the Machine”. The car will make its debut at the 24 Hours of LeMons Race, Aug. 11-12 in Thompson, CT, and will raise awareness and funds for the Hydrocephalus Association.

“We wanted to do everything we could to help not just Dean, but others who are battling this condition every day, and after meeting the folks at the Hydrocephalus Association, we knew we had found a group where we could make an impact. So we figured a unique way to raise awareness was to build a racecar, plaster the Hydrocephalus Association logo all over it, and take it around race tracks as fast as we could for incredibly long periods of time,” Bennett says. “Each race, we are going to look to individuals and companies to sponsor us per lap, with 100 percent of those donations going directly to the Hydrocephalus Association!”

Today, 3-year-old Dean has undergone three brain surgeries and is a healthy and happy child, but Bennett and his wife Julia know they will need to help Dean manage his condition for the rest of his life.

One in every 1,000 babies is born with hydrocephalus, a chronic, life-threatening condition marked by excess accumulation of cerebrospinal fluid on the brain. However, anyone at any time can develop hydrocephalus from a brain injury, tumor, or infection, and some people over 60 develop Normal Pressure Hydrocephalus, which is often misdiagnosed as Alzheimer’s, dementia or Parkinson’s. The primary treatment for hydrocephalus is the insertion of a device called a shunt –a small tube and a connected valve – into the brain to drain the excess cerebrospinal fluid to another part of the body. Shunts save lives, but frequently malfunction, become infected, or blocked. It is not uncommon for a person with hydrocephalus to have ten or more shunt-related brain surgeries throughout their lifetime, and some individuals will undergo more than 100 surgical procedures. Each surgery brings with it the risk of unknown long-term cognitive and health effects, and hydrocephalus can be fatal.

The “Dean the Machine” race car, branded with Hydrocephalus Association and #NOMOREBS logos, is also helping to bring attention to the limited treatment options available to the 1 million Americans living with hydrocephalus through the #NOMOREBS – No More Brain Surgeries – campaign. #NOMOREBS was launched by the Hydrocephalus Association to raise $20 million by 2020 to accelerate research and expand education and support services for this chronic neurological condition. The campaign highlights the need to minimize the number of brain surgeries people living with hydrocephalus must undergo in their lifetimes.

The Hydrocephalus Association (HA) is dedicated to eliminating the challenges of living with hydrocephalus for its patient population by investing in innovative research and providing comprehensive support and education services to patients and their loved ones. Since 2009, HA has committed more than $7 million to high-impact research into new treatments, means of prevention and, ultimately, a cure. Today, HA is the leading private funder of hydrocephalus research.

Show your support for “Dean the Machine” race car by making a donation to the Hydrocephalus Association!

Links

https://www.hydroassoc.org/

http://www.nomorebrainsurgeries.org/

 

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