Brains for the Cure

Get Help With Brain Tumors

Laura Cooke

Kansas City Survivors participate in workout class

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Written by Survivor and Head for the Cure Ambassador, Lisa Joerling

When I signed up for Head For the Cure’s Survivor Event I didn’t quite know what to expect. We met at WeBuild4Life and the staff gave us an introduction and detailed explanation on the workout ahead.

They focus on functionality for cancer survivors so we did a variety of different things including rowers, lunges, squats and pushups. I felt comfortable with what I was doing because the coaches Emily and Sami were right there helping us. The class was upbeat, positive and a lot of fun, They have small group classes, so we got to know the other members quickly.

My favorite part was the golden doodle, Ruth, running around. She was a great addition to our class. I got a great workout in, it was a nice change from the normal workouts I do and I was definitely sore for a few days after.

As cancer survivors, many of us have areas that are weaker than others or have some limitations, they will help you adapt to that and still allow you to the get the best workout for you. Because the vast majority of the people here are cancer survivors it is a non-intimidating gym because the other members just get it.

Staying active is important to me because it not only helps my physical health but my mental health as well so this was a great addition to my goal of staying active. 

Glioblastoma Awareness Day – One Day That Brought the Brain Tumor Community Together

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A Note from Head for the Cure Executive Director

Head for the Cure was thrilled to endorse the resolution of officially making July 17th National Glioblastoma Awareness Day. The inaugural day sparked a breathtaking movement not only for those who support Head for the Cure, but those affected by a brain tumor across the country. Never before have the major brain tumor foundations and organizations come together for one joint cause. It was absolutely amazing to watch!

This day was championed by the National Brain Tumor Society because of their working relationships with Congress and other key political figures. The resolution was unanimously passed after gaining several sponsors in the Senate for this resolution including Lindsay Graham (SC), Elizabeth Warren (Mass) and Roy Blunt (MO), to name a few. The NBTS then included other brain tumor advocacy groups including Head for the Cure to join the movement.

Through social media and other messaging, we heard powerful stories of survival, inspiration from personal journeys and struggles and remembered those who have lost their battle with a glioblastoma.

Bringing the brain tumor community together is incredibly important because a brain tumor diagnosis can be an isolating feeling. These stories connected those who are fighting or who have supported someone throughout their diagnosis; moreover, it also brought the movement to people who had no real idea about what a brain tumor diagnosis means to a person’s life.

Nothing is more compelling than sharing raw and vivid stories that enhance the human spirit, celebrate life and inspire others to carry on in someone’s memory. This disease is bigger than one organization…bigger than one person. This disease is illusive, has taken too many lives, and
the best way for us to find a cure is by continuing to collaborate for the greater good. No one fights alone!

Jenna Heilman is the Executive Director at Head for the Cure Foundation (HFTC). HFTC raises awareness, funds and hope for the brain tumor community in support of brain tumor research and programs, like Brains for the Cure. If you’d like to learn more about how to get involved to share your story or advocate for brain tumor patients, email [email protected].

State of Ohio Brain Cancer Advocacy Alert!

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Advocating for brain tumor patients and caregivers is crucial in the work done at the Head for the Cure Foundation to defeat brain cancer! That’s why we are asking you to join Head for the Cure, and Ohio State Representative Jeff Crossman, to provide your opinions on an extremely important matter.  Please take the time to read the notice below, regarding important information about helping make May officially Brain Cancer Awareness Month in the state of Ohio.

Overview:

While brain cancer advocacy groups continue to recognize May as Brain Cancer Awareness Month, this is not a national or state acknowledged month of advocacy and awareness.  Ohio State Representative Crossman has a personal reason to want to pass a bill officially designating May as Brain Cancer Awareness Month.

Rep. Crossman lost his mother, Rose Weikart, to a glioblastoma (GBM) in May 2018.  Rose was known as someone who was always taking care of other people. Even as the effects of the GBM became more and more apparent, she continued to think of others above herself. Crossman also lost his grandfather to brain cancer as well.

Unfortunately, there are too many similar stories as brain tumors can affect anyone, anywhere and at any time.  With more than 80,000 newly diagnosed in 2019 alone and the median life expectancy of a GBM still at 14-16 months, Crossman is leading this movement to help raise the awareness needed to help fight this disease! 

Act Now!

We need volunteers to tell their own personal stories to Ohio legislators on why formally designating May as Brain Cancer Awareness Month is so important. We would need all testimonials by September 1st.  In addition to the written testimonies, advocates are encouraged to testify in-person during one of the sessions in the early fall, once a date is established. We can help you craft your testimony letter.  If you are interested in joining the fight, please email Head for the Cure Executive Director, Jenna Heilman at  [email protected].

Your Voice Matters!

Adding Music Therapy to Your Treatment

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When someone is diagnosed with a brain tumor, the initial next steps include determining a treatment plan. The standard of care for a brain tumor may include more clinical treatments such as surgery, chemotherapy, and radiation. Additionally, patients may need to go through a variety of other therapies, including physical therapy or speech therapy directed at assisting the patient’s day to day functionality. One option patients may not automatically consider is music therapy.

Music therapy was formally introduced into Western medicine in the 1950s and is a less common type of therapy. However, it can assist in managing side effects of diagnosis and treatment such as anxiety, nausea, stress, and depression. According to an article published by M.D. Anderson Cancer Center, “When used in conjunction with conventional cancer treatments, music therapy has been found to help reduce pain and discomfort; improve mood and diminish stress; increase quality of life; and allow patients to better communicate their fears, sadness or other feelings.”

When working with a music therapist, there are two forms of therapy in which to participate: active or receptive.

Active therapy is more physically engaging and encourages patients to sing and play instruments. A therapist may have you sing about your most recent doctor’s appointment or play a percussion instrument while talking about your last chemotherapy treatment.

Receptive therapy is simply listening to recorded or live music and uses the therapeutic aspects of music to assist with the side effects of treatment.

Whether you were recently diagnosed, are currently going through treatment, or are a survivor, music therapy can be beneficial in all stages of your brain cancer journey. Music therapy can also be helpful for caregivers, family, and friends needing to find a way to cope with stress, anxiety, or depression.

You can find a qualified Music Therapist through the American Music Therapy Association’s directory.

Sources: National Center for Biotechnology Information, The ASCO Post, MD Anderson Cancer Center

Glioblastoma Awareness Day

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The National Brain Tumor Society (NBTS) has announced that July 17th will now be recognized as Glioblastoma Awareness Day across the country. With the support of Senator Lindsey Graham (R-SC) as a sponsor and co-sponsors Senate Majority Leader Mitch McConnell (R-KY), Senators Elizabeth Warren (D-MA), Kyrsten Sinema (D-AZ), Martha McSally (R-AZ), and Ed Markey (D-MA) S.Res. 245 was approved and passed by the full United States Senate.

Read the statement from NBTS Chief Executive Officer, David F. Arons, JD

Follow Head for the Cure and Brains for the Cure on social media to learn how you can be a part of this incredible day of awareness for those impacted by Glioblastomas and all brain tumors.