First comprehensive brain tumor volunteer network all about ‘YOU’
“You have a brain tumor.” These five words change the lives of more than 500 people and their loved ones across the U.S. every day. According to the American Brain Tumor Association (ABTA), a brain tumor diagnosis is typically met with confusion and uncertainty as families struggle to process the diagnosis, learn a new and difficult vocabulary, and make critical decisions about a course of treatment. The shock and devastation of a brain tumor diagnosis is accompanied by a sense of isolation and a frantic and, far too often, frustrating search for answers.
To ensure that there is trusted information and support at the point of diagnosis and throughout the trajectory of the disease, the ABTA announced today the launch of the first nationwide brain tumor volunteer network dedicated to serving the brain tumor population and cause.
“For more than 40 years, the ABTA has been a reliable resource for brain tumor supportive services and educational materials. However, we know from our interactions with families and the health care professionals caring for them, that there is an unmet and growing need for more information, education and support at the local level,” said Elizabeth M. Wilson, MNA, president and CEO, American Brain Tumor Association.
The ABTA’s national volunteer network, branded “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. Results validated the necessity for more education and resources for patients and families as well as a strong desire for greater opportunities for volunteer engagement.
During a recent gathering of brain tumor patients and caregivers, Cleveland resident and ABTA volunteer network focus group participant Sue Gessner shared, “I lost my husband to a brain tumor and I don’t want other families to go through what I did trying to find as much information as I could to make informed decisions when it all happens so fast. We need to get this information into patients’ and caregivers’ hands immediately, so they can digest it and understand their options.”
The ABTA offers publications, webinars, personal support services, and a social media platform exclusively for brain tumor patients and caregivers. According to Wilson, one role for volunteers is to help get information about these resources to local healthcare providers so that they can in turn share them with their patients.
Healthcare professionals are eager to provide additional resources to their patients. “When a newly diagnosed brain tumor patient comes into my clinic, I give them the ABTA’s ‘About Brain Tumors’ booklet, turn to the section about their tumor and encourage them to go home and read about it,” says Kelly Nicholas, MD, PhD, director, Neuro-Oncology, University of Chicago Medicine. “The ABTA is an invaluable service to patients and families, and every patient I’ve ever given this information to has always said thank you.”
According to Wilson, the ABTA CommYOUnity™, being introduced at the organization’s annual patient and family conference being held in Chicago, July 25-26, reflects the contemporary realities of nonprofit volunteerism.
“Not every volunteer is a fundraiser. Not every volunteer has the ability or time to organize or host a meeting. We also recognize that volunteer interests and time commitments are often fluid,” Wilson said. “Our goal is to ensure that over time, the ABTA CommYOUnity™ offers activities that advance our shared mission while providing opportunities for meaningful constituent engagement.”
Initially, ABTA CommYOUnity™ activities will be organized under four general areas of need designed to provide a formal structure while allowing for flexibility based on volunteer capacity and interest, including:
- Information, Awareness and Advocacy
- Peer-to-Peer Support
- Educating and Facilitating
“We are confident that by harnessing the energy and passion of thousands of volunteers expressly dedicated to the brain tumor cause, the ABTA CommYOUnity™ will achieve its goal to transform the field by advancing the understanding and treatment of brain tumors for patients, families and practitioners in communities nationwide,” Wilson said.
For more information, 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 support and education programs for all tumor types and all age groups. For more information, visit http://www.abta.org or call 800-886-ABTA (2282).
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