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…”