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Introducing the NEW Brains for the Cure!

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For the past several months, the Brains for the Cure team has been hard at work making updates to our available resources, specifically the addition of resources and videos for the caregivers in the brain tumor community.

Thank you to the generous support from GT Medical Technologies for partnering with us on this initiative.

Caregiver Connections

Whether you’re a patient or a caregiver, when you hear the words “brain tumor” it can feel incredible isolating and intimidating. Hear and read from other caregivers that have gone through a similar journey. Whether you are caring for your child, parent, spouse, sibling, friend, or are in another role, we have curated content from caregivers that filled a similar role.

Explore these videos here!

Caregiver Conversations

Join us every month for conversations on a variety of topics with other caregivers across the country. The first Caregiver Conversations will take place on Thursday, September 24th at 7 PM ET \ 6 PM ET \ 5 PM MT \ 4 PM PT. Register for our Caregiver Conversations here!

Caregiver Ambassadors

Brains for the Cure is welcoming a group of caregivers from across the country to serve as Caregiver Ambassadors. These individuals will have profiles featured on our website and serve as a resource for other caregivers looking to talk with someone who understands the journey they are navigating. These Ambassadors will also contribute to videos and articles available on our site.

Meet our Caregiver Ambassadors here!

Brains for the Cure is Head for the Cure’s largest program and empowers patients and caregivers through advocacy, peer-to-peer connection, and brain tumor educational resources to help them be informed decision makers in their journeys.

Introducing Brains For the Cure Caregiver Conversations

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Please fill out this form to receive the link to the Zoom call.

As a part of Brains for the Cure’s Caregiver Initiative, we are thrilled to announce our monthly Caregiver Conversations taking place on Zoom. Join us each month to meet with other caregivers across the country on a variety of topics. If you are interested in being a moderator for one of these conversations, please email [email protected].

Upcoming Caregiver Conversations

Thursday, September 24th

Thursday, October 29th

Thursday, November 19th

Thursday, December 17th

Introducing the Glioblastoma Bill of Rights

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Initiated by the nonprofit, OurBrainBank, Brains for the Cure and many other advocacy groups, including Head for the Cure, are honored to present the Glioblastoma Bill of Rights.

It is estimated that 87,000 people will be diagnosed with a brain tumor this year, and 14.6% of those diagnoses will be a glioblastoma. From OurBrainBank “the GBM Bill of Rights was crafted from the results of a 2019 survey taken by 400+ GBM patients and caregivers. It includes the right to: personalized care, genetic testing, a second opinion, experimental trials and treatments, psychological support, money-blind treatment, fast-tracked MRI results, best end-of-life care, and more.”

Staying Strong as a Caregiver: Navigating Work and Grief in a Pandemic

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Written by: Courtney Benisch – Regional Relationship Coordinator for Head for the Cure

This year has been nothing but a roller coaster, and as a caregiver, I cannot even imagine what it is like watching your loved one who is battling brain cancer go through it as well. The pandemic has not only affected treatments, surgeries, and general doctor’s appointments, but it has also added another layer of stress for your loved one and the rest of your family.

Supporting Brain Tumor Patients in a Pandemic

Now more than ever, patients and caregivers may be turning to the internet for information about a brain tumor diagnosis. With limited in-person interaction at hospitals and the increase in telehealth appointments, it can all be a bit overwhelming knowing where to turn for help. Talking with your doctors and nurses is incredibly important but using a website like Brains for the Cure could be a bit more comforting with its inclusion of stories from patients, caregivers, and doctors.

Changes at Work

One thing it has affected me personally and professionally is our amazing 5K events. When I started working for the foundation back in 2018, I had already had two years of supporting Head for the Cure under my belt as a participant. However, being able to help others even more by planning our incredible 5K events made it even more special. Going into 2020 I was excited to see the amazing survivors, strong caregivers, and supporters in the various cities I work with. Everyone has such a special place in my heart and not being able to hug them all stinks!

When COVID-19 hit, my world came to a halt, as it did the rest of the world. Personally, I have been working remotely for over a year now so being at home 24/7 wasn’t something new to me. However, it was the heavy news cycle, not being able to go out and get some fresh air when needed, and general blanket of anxiety that set in. At Head for the Cure, we now had to figure out how to hold our monumental 5K events and fundraisers in a way we have never done before. It has been hard work, but so inspiring at the same time.

Moving our physical events to online events has been a whirlwind experience because we want to make sure all of our aspects of our physical 5K events for every single city is shown online. The biggest thing for me about the transition was “how are we going to honor survivors and caregivers still?” I think we have figured out not only how to do both of those things, and even more now. I’m so thankful we get to honor and celebrate everyone in such a different way.

Honoring My Mom Virtually

Courtney, friends, and family honoring her mom’s memory with Team ekSTRONG at the Head for the Cure – Metro KC 5K in 2018.

Now that my hometown event is coming up in August, it has me thinking how I want to honor my mom in our virtual event. There are so many options! If you haven’t had the chance to watch one of our virtual events, you can find them here. You get to see so many more aspects of what Head for the Cure does on “race day” and I am excited to get brainstorming with my family. Here are some of our ideas so far:

  • Record a testimonial with my brother and stepdad via Zoom
  • Ask family and friends to send me their testimonials about why they support Head for the Cure
  • Create a short video from photos of past events to include in the Wall of Hope slideshow
  • Send in my mom’s favorite quote or memory of her for the Celebration of Life video

How will you get involved in our virtual events? Learn more at headforthecure.org.

Jenguin’s Journey – Facing a Different Front: Dodging Side Effects During Battle

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Written by Jenny Williams (aka ‘Jenguin’) – Head for the Cure Ambassador

Watching TV, you’re bound to see one of those commercials for a pharmaceutical drug where they list out the side effects, and somewhere in that fast blurb of side effects, you might overhear the words “…which is serious and may result in death.” You might think, “Why would anyone take that medication?!” I think about that sometimes. I’m taking a couple of drugs that come with some pretty awful side effects, but sometimes it’s worth it when the disease you’re dealing with could take your life.

Jenny’s Side Effects

I’ve been tired. I’ve been queasy. I now take an anti-nausea medication to help me cope with the queasiness, but that comes with its own side effects that I have to manage with over-the-counter laxatives, which also might have some side effects. It seems to be a never-ending loop of ailments, and that in itself is exhausting.

This week, I received an antacid to help with some reflux I had been experiencing. After my first dose and some dinner, I felt hot and incredibly itchy. Looking down at my legs, I noticed some red blotches. My entire body had turned into a minefield of hot spots, tempting me to itch them. It soon became clear that I was having an allergic reaction, and the thought of going to the emergency room during a pandemic drove me into a state of panic.

I did whatever I could to keep the explosive itching at bay while staying home. The next day was filled with around-the-clock Benadryl, phone calls with nurses and rest. 48 hours after it all began, I was itch-free and glad to have dodged a visit to the ER.

Next Blood Check

Life as usual continued with my weekly blood check at the local somewhat-empty hospital. I recounted my itchy experience with the oncologist over the phone when he called me with my lab test results. Despite my unfortunate reaction to the antacid, my blood counts remained stable. A bit on the low end, but nothing to warrant any action. I happily took this small victory in what seems to be a long battle.