Head to the Hill Advocacy Day – Blog

HTH 2019 Washington DC2From May 5-7, 2019, hundreds of members of the brain tumor community— along with five patients from the Henry Ford Hermelin Brain Tumor Center and Dr. James Snyder neurology specialist at Henry Ford Hospital – met in Washington, D.C., as part of the annual Head to the Hill advocacy day to persuade elected officials to delegate more funding to brain cancer research. Here’s their story. 

Nestelynn Gay:

Worthwhile Experience

I am now working at Henry Ford Hospital with dual responsibility to Neurology and Neurosurgery (by way of the Hermelin Brain Tumor Center. …That awesome place where I was treated!) Did you know that Henry Ford is certified by CERN as a National Center of Excellence in the treatment of Ependymomas, and the only one in Michigan? In my role as Patient Resource Coordinator, I work closely with the Neuro-Oncology physicians. Dr. James Snyder, one of our Neuro-Oncologists, asked me if I’d heard of Head to the Hill. ...He thought it would be a worthwhile experience both in my role at work and as a patient. 

Treatment

On March 4, 2019, …it was time to begin active treatment after years of active surveillance. Having not had chemo or radiation before, it was a jagged little pill to swallow, although one I felt like I’d been preparing 6 years for. The only time I cried in those early days was when I realized that the physical effects from the radiation treatments I was about to have for the next 6 weeks could affect the opportunity I had to attend. I made the conscious decision to push through with the goal of flying to Washington D.C. on May 5th and being in “the room where it happens.”

Lifetime opportunity

Sitting in the Senate chamber was a once in a lifetime opportunity provided by Senator Stabenow. ...Thank you for this extraordinary opportunity!


Mary “Molly” Marco:

No Quick Fix
 
I have a Grade 3 brain cancer: anaplastic astrocytoma. My cancer wants to be a Grade 4 glioblastoma (GBM) when it “grows up.” My tumor is expected to return either as itself or GBM, at some point in my life. These brain cancers have tendrils in delicate places. There’s no quick fix. My tumor started to grow very slowly... It is in my deep temporal lobe/hippocampal region. My short-term memory and language are affected. We expect my cancer to return. We want to be ready. Part of being ready is ADVOCATING FOR PROGRESS. 

Lemons to Lemonade
 
When life hands you lemons, you actually do have a choice: Try to make something good out of a terrible diagnosis, or not. …Doing some good by engaging with other brain tumor patients, increasing general awareness, and telling my story – that’s something that matters. Lemons to lemonade. 

ASK!
 
Part of lemons-to-lemonade is being able to ask our Congress to: 
  1. Prioritize Medical Research in Fiscal Year 2020, providing generous funding for National Institute of Health (NIH) at $41.6 billion and National Cancer Institute at $6.5222 billion. 
  2. $30 million in funding to continue on with programs created by Childhood Cancer STAR Act. 
  3. $120 million funding for Peer Reviewed Cancer Research Program within the DOD, as well as continuing inclusion of pediatric brain tumors/cancers as eligible areas for funding. 
  4. Support for H.R. 647, which is the Palliative Care and Hospice Education and Training Act (PCHETA). 
     

Successful Outcomes

Nestelynn was in the prime of her life when she was diagnosed with a glioma in the frontal lobe of her brain. DNA from her tumor revealed that with surgery, her tumor was curable.

Read her story

Excellence in Care

Tiffany Crowe was treated at the Hermelin Brain Tumor Center when her tumor came back. Her story demonstrates the importance of precision medicine and MRI in determining an aggressive, but safe route to a tumor.

Learn More

Tiffany Crowe

Approved Treatments

There are currently only a handful of approved treatments for brain tumors, and not all tumors respond to those in the same way. Since diagnosis in 2006, I have been through 4 different treatments including radiation therapy, but unfortunately my tumor has recurred 6 times, leading to 7 surgeries. Not only have I experienced side effects from both radiation and chemotherapy that impact my quality of life to this day, my surgeries have left me with a weakened left arm and fine motor and dexterity issues on my left hand. 

Palliative Care

Before Head to the Hill, I did not know the difference between palliative care and hospice. I now understand that palliative care is focused on reducing suffering and improving quality of life for patients and families impacted by serious illnesses, like brain tumors. While palliative care can be part of hospice, palliative care can and should be…introduced early either at or shortly after diagnosis. …I have not opted in to palliative care simply because I did not know what it was, and associating it with hospice made it scary to me. 

Butterfly Release

The butterfly is chosen to represent the spirit of the ependymoma community as a symbol of hope through change. …Even though it seemed like the butterflies needed pep talks to get flying, the event was a success. 


Chris GeeChris Gee:

Members of Congress

Advocating to members of Congress was an eye-opening experience. (D) Senator Debbie Stabenow…was very interested. She offered great feedback and engaged each and every one of us. …Next, we went to (D) Senator Gary Peters, and he was a little hard to read. …Nice and listening, but one eye on the door. …

We met with two different staffers, one for representative [Andy] Levin and one for representative Elissa Slotkin. Both were extremely nice. Unfortunately, each had a family member that was, or is going through cancer. That did seem to help them really listen to our stories, and we heard theirs. 

We finished our day with representative Jack Bergman, the one I was most looking forward to seeing. …He did not disappoint – EXTREMELY, EXTREMELY interested, and engaging. He said, like Senator Stabenow, he had already signed one of the Bills we were advocating for. And he said he was working on something similar to what we were asking for and that he would be proposing in the near future.

 


Austin Washington

Research Side

My favorite part was the National Institute of Health’s (NIH) presentation as I am very interested in the research side of medicine. …It was amazing — all the innovations and specially designed scientific instruments and machines that are on the NIH campus’ brain tumor division as well as all the skilled surgeons on staff. 

Inspired 

I was very inspired to carry on and persevere in life when I heard many other people’s situations, many of which were told with a positive attitude filled with a strong sense of purpose not to let brain tumors defeat them. The event felt like more of a community because each and every person in attendance had a complete understanding of my and everyone else’s situation. 

Strong Impact

I felt we had a strong impact because the members of Congress were able to see exactly where the research dollars needed to go. Those that were already in favor of what we were asking and those that were indifferent or uninformed needed to see us there and hear our stories to confirm what they should be doing for us. All in all, the experience was amazing and unforgettable!

 


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