American Brain Tumor Association Celebrates Brain Tumor Awareness Month with Launch of ABTA CommYOUnity™

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Poll findings underscore need for first nationwide brain tumor volunteer network

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Most important things to have known at the point of a brain tumor diagnosis

A brain tumor diagnosis is devastating and met with confusion and uncertainty as families struggle to process the diagnosis, learn a new and challenging vocabulary, and make critical decisions about a course of treatment in a short amount of time.

The American Brain Tumor Association (ABTA) has announced the official launch of ABTA CommYOUnity™, the first nationwide volunteer network dedicated to the brain tumor community and cause. The announcement corresponds with the release of recent ABTA poll results revealing patient and caregiver needs for greater awareness and education at the time of diagnosis.

“A brain tumor diagnosis is devastating and met with confusion and uncertainty as families struggle to process the diagnosis, learn a new and challenging vocabulary, and make critical decisions about a course of treatment in a short amount of time,” said Elizabeth M. Wilson, president and CEO, American Brain Tumor Association. “For many, the shock of a brain tumor diagnosis is accompanied by a sense of fear and isolation and an often frantic search for answers.”

According to Wilson, findings from an ABTA poll of more than 2300 patients and caregivers about their information needs at the time of diagnosis underscores the need for a grass roots awareness effort. “The ABTA CommYOUnity is a network of volunteers who have already been through the experience and are passionate about letting others facing this diagnosis know that they are not alone,” Wilson said.

Findings reveal:

  • Sixty-seven percent of respondents felt they had only a few days or less to make critical decisions about their course of treatment.
  • Forty-two percent of respondents stated that the most important thing they wish they would have known at the time they were diagnosed was what questions to ask their healthcare team.
  • Twenty-one percent answered that they wish they would have known where to turn for comprehensive resources about brain tumors.
  • Forty percent reported not being referred to additional resources for more information.

The ABTA CommYOUnity is the result of surveys and focus groups of healthcare professionals, patients and caregivers across the country to identify the most pressing needs for patients and families upon receiving and then living with a brain tumor diagnosis. It is designed to be patient centric with an initial four core areas:    

  • Amp Up:         Information, Awareness and Advocacy
  • Link Up:    Peer-to-Peer Support
  • Raise Up:    Fundraising
  • Step Up:    Educating and Facilitating

To learn more about the ABTA CommYOUnity, go to http://www.abta.org/commYOUnity.

ABOUT THE AMERICAN BRAIN TUMOR ASSOCIATION
Founded in 1973, the American Brain Tumor Association was first and is now the only national organization committed to funding brain tumor research and providing information and education on all tumor types for all age groups. For more information, visit http://www.abta.org or call 800-886-ABTA (2282).

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Editor's note:
Executive summary of poll results: http://www.abta.org/resources/american-brain-tumor.pdf

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Julie Landmesser
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