As her daughter fought a brain tumor, part of Sue’s responsibility was to help ensure that she could maintain her home and the sense of dignity that went along with it, even as her mobility and independence took a hit.
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Latest from Novocure and GT Medical Technologies
Although the official GBM Awareness Day is coming to an end, that doesn’t mean the message and fight behind today is going anywhere. Brains for the Cure, along with so many more in the brain tumor community, will continue to fight each day and provide the latest in brain tumor research and resources.
The standard treatment options for glioblastoma patients has changed very little in the past 30 years. You can read more about the breakdown of a glioblastoma diagnosis in this article from Dr. Simon Khagi. However, two the two companies responsible for creating incredibly innovative devices, Novocure and GT Medical Technologies, continue to move forward and make progress in their research to creating a better quality of life for patients and improving survival rates.
Novocure Announces the First Patient Enrolled in EF-33 Phase 2 Pilot Trial
Novocure, the creator of Optune, announced today that the first patients has been enrolled in its EF-33 Phase 2 Pilot Trial of Tumor Treating Fields in patients with recurrent glioblastoma. According to Novocure, “Tumor Treating Fields is a cancer therapy that uses electric fields tuned to specific frequencies to disrupt cell division.”
Learn more about this trial, the Optune Device, and Novocure’s ‘Patient Forward’ approach here.
Upcoming Webinar from GT Medical Technologies
GT Medical Technologies, creator of GammaTile Therapy, announced an upcoming webinar presented by Dr. Clark Chen from the University of Minnesota. GammaTile Therapy is FDA-cleared for newly diagnosed malignant and recurrent brain tumors. Dr. Chen will discuss achieving local tumor control with the use of GammaTile Therapy during the webinar on Monday, July 27th at 7 AM PST. You can register for the webinar here.
Introducing the Glioblastoma Bill of Rights
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
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
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.
Brains for the Cure Partners With GammaTile®
Brains for the Cure (BFTC) is thrilled to announce a new partnership with the creators of GammaTile®, GT Medical Technologies, to provide resources and guidance for caregivers of brain tumor patients.
BFTC is made possible by donations to the Head for the Cure Foundation. BFTC was launched as an online patient navigator in 2017 to help patients understand, manage, and cope with all the twists and turns of a brain tumor diagnosis. After a re-launch in 2019, BFTC provides resources, news updates, and video testimonials to help patients through their journey. The next phase, complete in 2020, focuses on supporting caregivers who are an integral part of a patient’s diagnosis.
GT Medical Technologies has a purpose of “improving the lives of patients with brain tumors.” Their FDA-cleared device, GammaTile®, was created to address an unmet need.
GammaTile® Therapy is a Surgically Targeted Radiation Therapy (STaRT) that is implanted in the last five minutes of a brain tumor removal surgery, and immediately begins delivering radiation treatment to remaining tumor cells. Patients receive their radiation while going about their daily lives, without the need for follow up appointments for radiation treatments. By getting a head STaRT on fighting the tumor, GammaTile® Therapy can extend local recurrence-free survival with minimal complications, reduced patient and caregiver burden, and assured treatment compliance.
Together, BFTC and GammaTile are committed to supporting brain tumor patients, but they want the caregivers in the brain tumor community to feel the same amount of support as an important part of the patient’s team. The Brains for the Cure Caregiver Initiative will be powered by a grant from GammaTile®.
Brains for the Cure looks forward to this growing partnership with GT Medical Technologies and continuing to serve caregivers and patients through their brain tumor journey.
