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Founder

The American Brain Tumor Association was established in 1973 by founder Susan Netchin Kramer (right) and co-founder Linda Gene Goldstein, who both had young daughters with brain tumors.

The American Brain Tumor Association was established in 1973 by founder Susan Netchin Kramer (below) and co-founder Linda Gene Goldstein, who both had young daughters with brain tumors.

Founders Daughter Inspires a Legacy of Pursuing Answers
Founder Susan Kramer's daughter, Stephanie

Our Lives Changed Forever

In 1972, Susan Kramer was a busy young mother with two preschool daughters. However, in March, her life changed forever when she learned her 4-year-old daughter, Stephanie, had a brain tumor.

 

“We could not have asked for more in a child. She promised so much; so bright, caring, loving, and remarkably beautiful,” Susan said. “The doctors’ diagnosis told us that Stephanie’s promise would never be fulfilled. No, not Stephanie. Not my child. Such things happen to other people. But, truth to tell, we are ‘other people.’”

Linda’s daughter Micki Rae Shanoff was a typical 6-year-old girl. She loved warm jammies, frilly dresses, going to Sunday lunch with her dad, and anything that was purple.

“How lucky and honored I was to be her mother,” Linda said. “Our all-American girl never realized how wonderful or beautiful she was.”

One day in August of 1972, Micki Rae didn’t feel well. She crawled into Linda’s bed and said she was seeing two of everything. The doctor’s performed exploratory surgery and found that Micki Rae had a glioblastoma multiforme of the pons and predicted she had only four to six months to live.

After four and a half months in the hospital, Micki Rae went into remission for two weeks. She came home from the hospital and immediately ran out to play with the neighborhood kids. She even went to first grade for a week. But on January 8, 1973, Micki Rae passed away.

Filling an Unmet Need

 

Susan reached out to Linda and asked if she would be interested in starting an organization, in memory of Micki Rae, to raise funds for brain tumor research. At the time, brain tumor research had very little funding. Susan and Linda learned that far more was needed than just money. Beyond dollars, more support, information and answers to questions like where to go, what to do, who to see, and how to cope, was needed.

They began planning in January 1973. They contacted family, friends, associates and doctors to gain support and learn more. In April 1973, Susan and Linda held the organization’s first informational meeting and were heartened and encouraged by the wonderful outcome.

Relentlessness of a Brain Tumor

 

In June of 1974, two years after Stephanie completed radiation therapy, the tumor was back. Stephanie spent the summer in a wheelchair, traveling to California for her experimental chemotherapy treatments. On August 19, Stephanie’s family celebrated her seventh birthday with a great “hoopla” at the pool she loved under the summer sun. Two weeks later, on September 3, 1974, Stephanie passed away.

Two Girls and Their Mothers Inspire a Legacy of Pursuing Answers

 

Decades after hosting their first informational meeting for brain tumor patients and their families, Linda passed away, leaving behind a legacy of pursuing answers for the brain tumor community.

Both Susan and Linda have said they never could have imagined that their little foundation would grow into the international organization it is today. They give credit to their special little girls – who brought so much love and sunshine to everyone around them. Micki Rae and Stephanie gave them the inspiration to help others find answers and cope with this terrible illness.

Through the ABTA, their promise is being fulfilled.

Micki Rae Shanoff

Gina & Tim Abbas
Caregiver & Anaplastic Astrocytoma Survivor

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