Written by Dave Gil de Rubio Wednesday, 11 September 2013 00:00
According to Voices Against Brain Cancer, an organization that raises awareness and money to fight this disease, more than 200,000 people in the United States are annually diagnosed with a primary or metastatic brain tumor with the former comprising approximately 40,000 of these diagnoses. Roz Bernstein’s husband, Dr. Robert Bernstein, happened to be one of those numbers when he was diagnosed with a malignant brain tumor blastoma back in January 2009. It wound up taking his life 17 months later, when he died in June 2010. By October 2011, his widow kicked off the first Run for Rob 5K Run/Walk in Eisenhower Park. And while the circumstances behind it was horrible, it was something his surviving spouse felt she had to do.
“He was such an incredible human being and I thought I can’t let this legacy go away and I needed to do something that I was put on this earth to do besides being a wife and a mother,” Bernstein explained. “Mario Lichtenstein, who is the founder of Voices Against Brain Cancer—he lost his son to brain cancer—reached out to me through a friend. That’s how I became involved with Voices Against Brain Cancer and I eventually wound up on the board.”
The first two Run for Rob 5K Run/Walks were held at Bethpage State Park and raised $100,000 and went from 300 people participating to 480 showing up last year, despite the fact that it was held the day before Hurricane Sandy ripped through the area. With the amount of people participating increasing to an anticipated 500 to 880 participants, a move was needed to a larger venue with a loop. Hence its inaugural staging in Eisenhower Park this year. In addition, special recognition is given to caregivers, health practitioners and families who have made extraordinary efforts in the face of the intricate difficulties in dealing with brain cancer. Awards are given for courage, compassionate care and Humanitarian of the Year. One of the categories is the Vision of Hope Award, which is going to the Muscarella family. It’s given to individuals, families or companies whose ongoing work to help families affected by brain tumors or brain cancer and whose efforts to bring awareness to the cause are truly notable. Since the 5K Run/Walk started, this Garden City clan has been out in force, this year going 50-strong in memory of Paul Muscarella, who was 47 years old when he passed away from the disease on Columbus Day in 2010.
One of the outcomes of Muscarella’s diagnosis was his decision to only undergo treatment that would either cure him or help others. His approach to the disease enabled him to become the first person with an inoperable brain tumor to have a micro catheter threaded through his groin up to his brain for purposes of spraying the drug Avastin directly onto the tumor. It’s this kind of selflessness that’s inspired his surviving family to get involved with the Run for Rob according to his brother Tommy.
“We have a large family. It’s almost like we were brought into it to be put to the test to see whether or not we can [help Voices Against Brain Cancer find a way to] accomplish a better route [of treatment],” he said. “We’re left with the loss of a loved one and the possibility of getting it right for somebody else. We want to take that next step to help out that person that it’s going to affect next time.”
And while all this activism involves a lot of work, Bernstein finds that she’s found plenty of purpose and satisfaction out of her involvement with Voices Against Brain Cancer and in spearheading the Run for Rob every year.
“From the very first moment that I got involved in Voices, all of a sudden you mention things and people say they know somebody [that has it]. It’s the kind of thing if you don’t talk about it, nobody will stir the pot. I feel like I stirred the pot a little bit and I’m raising awareness,” she said. “I feel that my journey in life is to be there for those that are suffering now, helping them and making it a little easier to know that there are other people that understand what you’re going through. I was blessed with a fabulous life and to give back now is my pleasure.”
The Third Annual Run for Rob 5K Run/Walk will be taking place on Sunday, Sept. 22 at Eisenhower Park in East Meadow with registration starting at 8 a.m. and the event beginning at 9 a.m. For more information, please visit voicesinmotion.org/runforrob For more information about Voices Against Brain Cancer, please visit www.voicesagainstbraincancer.org