Tag Archives: brain tumor awareness

Both Sides Now

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It was a warm summer day in late June 2008 when Mom and I drove to Newport, searching for an apartment for my second year of law school. Beneath the surface, we both sensed that something was deeply wrong with me. Still, I was determined to see this chapter through and become a lawyer—though I had no idea just how much my path was about to change.

I look at my life in two parts: the win and the lose. And when I do, I realize how grateful I am for what I went through.

But for my diagnosis, I would not have had this opportunity to make a difference and lead a life that is so fulfilling. My tumor deprived me of my cognitive functions and eventually, my desire to be a lawyer. In its place, it opened a door to something far more meaningful.

Today, as CEO for the Connecticut Brain Tumor Alliance, I am tasked with carrying out the duties of the board of directors and fulfilling our mission. One critical aspect of this is to raise awareness of brain tumors and to make Connecticut a center of excellence for brain tumor care.

My dear friend Tracey Gamer-Fanning, along with the co-founding members of the CTBTA, worked tirelessly in furtherance of our mission but collectively, we were never able to bring it across the finish line – until now.

An estimated 93,000 Americans will be diagnosed with a primary brain tumor in 2025, and more specifically, in Connecticut, over 1,000 people will be diagnosed and over 200 people will die from this disease. Malignant brain tumors are among the deadliest forms of cancer with just a 35.7% five-year survival rate. Approximately 72% of newly diagnosed brain tumors are benign, but benign is not fine. Though my tumor was “not cancerous,” it still occupied precious space in my head and did substantial damage. There is a certain stigma around a brain tumor diagnosis and for the reasons mentioned above, it is not as celebrated as other forms of cancers.

Pre-law school, I worked for a government relations team, advocating for various causes and clients and this is exactly what I wanted to do with my life upon graduating. Seventeen years later, I did just that — just not in the way I imagined.

Congress first passed resolutions in 2008, denoting May as “Brain Tumor Awareness Month” but Connecticut did not have any laws on the book or resolutions noting the same, so building off the momentum of the National Brain Tumor Society and with our board, I worked to secure a gubernatorial proclamation recognizing May as Brain Tumor Awareness Month in Connecticut. This was a full-circle moment—a monumental success—but just the beginning!

On May 7th, members of our community and I were invited to the State Capitol for “Connecticut Brain Tumor Awareness Day.” A table in the rotunda displayed our mission. Legislators and members of the public stopped by to express appreciation for our work and efforts, but also sharing their own personal connections to this cause. Along with members of our board, our volunteers, patients and survivors, we were introduced on the House and Senate floors, respectively. Their remarks were heartfelt and sincere, bringing immediate awareness to our cause. Over the years, there have been several moments and days that I am proud of, but with certainty, this day was my proudest in my role leading the CTBTA.

A few days later, we celebrated our twelfth annual Path of Hope 5k in Bushnell Park, just adjacent to the capitol building. Thanks to all of you, we had our most successful year, raising over $220,000 with over 1,000 participants. Former teams, new teams, members of the brain tumor community came together for a day filled of hope, love, support and encouragement. I love watching this event grow. Thinking back to our first 5K in 2014 to the present day, it gives me great pride knowing we are making a difference, but there is no room for complacency.

As the month progressed, there was still work to be done on the awareness front and knowing that a gubernatorial proclamation is not permanent, I helped draft language in a bill to codify May as Brain Tumor Awareness Month in Connecticut. Just this past Friday, I witnessed the House unanimously pass the legislation, in concurrence with the Senate. Once Governor Lamont signs it into law, May will be officially recognized as “Brain Tumor Awareness Month” in perpetuity —an epic milestone for all of us.

This was the dream of our founding board members and I’m honored to have helped bring it to life, and I look forward to continuing the work they so bravely began.

Life is humbling — at some point, the things we thought we wanted and the goals we chased change, as do our perspectives. For me, that shift has been a blessing and fortunately for me, this has been for the better.

“I’ve looked at life from both sides now, from win and lose.”

Lean on Me

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If the final week of May (better known as “Brain Tumor Awareness Month” in our community) is anything like the first nineteen days, we have many reasons to be hopeful and optimistic.

I acknowledge that I’ve been a bit quieter here of late, but as time has gone on and the more removed I am from the day-to-day doctor appointments and visits, the less I have to share about my personal journey. My annual MRI earlier this year was “unremarkable,” which in laymen’s terms is a good thing. I have been seizure free for ten years now and the shunt continues to do what it is supposed to do. I have come full circle and I believe that I am exactly where I am supposed to be and I am humbled that Smilow Cancer Hospital/Yale New Haven Health wanted to feature me in their spring publication, which was published last week. I recognize how fortunate I am and for the care I received, so I was amenable to sharing my story and am proud to share it here.

The CTBTA began the month with a visit to one of our hospital partners and presented a check in the amount of $25,000 for patient assistance funds and brain tumor center support. We will visit another hospital later this week and present an additional $40,000 for brain tumor research, patient assistance and general support. In total, we granted out $175,000 to the brain tumor centers in the state and an additional $10,000 to Healing Meals Community Fund, in support of the Tracey Gamer-Fanning CTBTA/Healing Meals Patient Assistance Funds. This fund is specifically for brain tumor patients and families to provide up to three months of healthy, nutrient-based cooked meals to brain tumor patients and as many as four of their family members, delivered by Healing Meals Delivery Angels at no cost to the patients and their family. Our beloved Tracey would be proud and is smiling down, undoubtedly.

Following our visit, we shifted gears and executed another very successful Path of Hope 5K. Held in Bushnell Park for the first time, this year’s event has raised $155,000 (and counting) and brought hundreds of members of the brain tumor community together for a day of hope, compassion, laughter and awareness.

We took this opportunity to recognize doctors, nurses and some incredible patients for their efforts and courage in facing this disease and having the backdrop of the Connecticut State Capitol behind us, I can think of no better way to raise awareness and have our voices heard. There are an estimated 1 million Americans living with a primary brain tumor and an estimated 94,000 more will be diagnosed this year. With over 130+ types of brain tumors, coupled with the fact that the standard of care for treating a brain tumor has not changed in the past 25+ years, more funding is needed on all levels and the Path of Hope is just one of many ways that the CTBTA is supporting patients, their families and the doctors.

Later in the week, we attended a support group dinner for brain tumor patients and their families, hosted by another of our partner hospitals. For the many patients and their caregivers reading here, you know that experiencing surgery and the days that follow recovering can be scary and difficult, which is why the CTBTA was organized in the first place. We wanted to talk to someone else who also had brain surgery, to ask questions and share stories. Fortunately for you, that has continued seventeen years later and we are still here, willing and wanting to connect. We are fortunate to have great brain tumor centers in our state, many of which operate their own support groups and Smilow Cancer Hospital recently initiated a dinner series for its patients and their families, sponsored by the CTBTA.

The next night, I joined a webinar, titled “Smilow Shares: Brain Tumor Awareness,” an informational and educational segment for patients and families. For anyone interested, I have included the link for you.

Last but not least, yesterday the CTBTA, along with several other organizations attended and participated in the New York Yankees “Brain Health Awareness” initiative – very apropos during the month of May!

I rest easier now, knowing that I am on the other side of this battle and my worst days are behind me, but let me be clear: your fight is now my fight and we’re in this together. Through the CTBTA and this incredible community we’ve built together, we will conquer this disease and I am optimistic that in my lifetime, additional therapies and treatments will be developed from the medical community through a better understanding and knowledge of brain tumors. Until then, and as the talented Bill Withers once said, “Lean on me, when you’re not strong, and I’ll be your friend, I’ll help you carry on…”