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Brain tumor survivor walks 250 miles to bring awareness

Founder/Director of “Brain Matters Inc.” speaks about her cause

By ALTHEA BENLOSS
On September 27, 2011

20 years ago, wife and mother Heidi Gottlieb received news that changed her entire life. Doctors diagnosed her with a benign brain tumor, which eventually turned out to be cancerous. Since then, she has had two brain surgeries and two rounds of radiation. This experience led her to become the founder and director of "Brain Matters," an organization created to bring awareness to the public about brain tumors.

Gottlieb has endured several surgeries, radiation, side effects such as double vision, trouble swallowing and paralysis of the tongue and also, the feeling of fear. When she was first given the news, her daughter was one year old and it was a "frightening time." It was a time before the Internet and where it was very difficult to find out information about different diseases. Just three years ago she was told that she had a slow-growing, cancerous brain tumor, but after proton radiation, the tumor stopped growing. She is a wife and mother of two and although it is still somewhat scary, Gottlieb is happy about the Internet availability and the knowledge she has now.

On October 1, Gottlieb will be Walking Miles 4 Brain Matters, from her home in Port Washington, NY to Massachusetts General Hospital's Francis H. Burr Proton Therapy Center where she was last treated (in 2008)—because this time going there will be under her control. This will be, in total, a walk of 250 miles.

"I am walking for a cause that needs more awareness," Gottlieb said. "I'm shining a light on a subject quite dark."

Gottlieb plans to film a lot of this and will stop at schools, hospitals and various businesses to introduce herself and hand out flyers.

"I'm hoping to have more school participation," she said. "I wish I had more time and more people."

Gottlieb said that during the planning of this event she focused more on high schools, but if she had known how difficult it was for high schools to get on board with a project like this, she would have pursued colleges. The estimated number of participants in the walk is yet to be seen, but she will try to post her routes online as she walks.

Gottlieb plans to be in Bridgeport on October 7 and is looking for supporters—whether to join in the walk or to donate for the cause.

"The Brain Matters fundraising website with some great donation ‘perks' will be up until September 30 and we're still trying to reach our goal," she said. "The link to that site is http://www.indiegogo.com/brain-matters."

Gottlieb emphasized the importance of using a headset with one's cell phone. She describes herself as an early cell phone user and, as a former film producer, she stated that she was on film sets in 1985 when cell phones weighed "about 5 pounds" and received poor reception.

"The weight has decreased and the reception is much, much better, but there is more and more information and statistics that connects cell phone use to brain tumors, especially cancerous brain tumors," she said. "Why take the risk? Wear a headset."

Gottlieb has redefined what it means to keep moving forward and this walk is meant to help create the awareness it needs about a disease that affects thousands of people each year.

"I'm one of the lucky ones," Gottlieb said. "And there aren't many, unfortunately."

Gottlieb plans to write a book in the future about her story and hopes it will be inspirational to people.

Visit www.Brain-matters.org to donate to "Brain Matters" and learn more about how you can get involved.


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