Tag Archives: adversity

Sailing

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“If the wind is right, you can sail away and find tranquility.”

It has been seventeen years since I was rushed into the hospital for emergency brain surgery to remove the monster. I had just completed my first year of law school and had my whole life ahead of me.

At 24,  life is supposed to feel infinite. Boundless. Full of promise.

But in an instant, mine felt small. Fragile. Finite.

I summoned my courage and like to think I faced the prospect of what was ahead of me with bravery, calmness and clarity. But the truth is, I had my doubts and was terrified. Not just of the tumor itself and what it would do to me, but of the unknown. Looking back, I was fortunate that I had no time to process what I was about to face – I was immediately admitted and prepped for surgery at the same time the diagnosis was being shared with my family and I. But in the days and weeks that followed, the “what ifs” ran through my mind and the life I thought I was building suddenly became unrecognizable.

Would I ever return to school, as I was in rehab to relearn the alphabet and how to write my name? Would Ashley and my friends all move on as I lay there, unable to communicate? If the results of the neuropsychological exam were really correct, what would I do with my life and who would care for me?

As I sit here today, I can proudly say that, sometimes, the wind is right again.

The past seventeen years taught me that life will be full of ups and downs, highs and lows. Healing isn’t always about an immediate recovery and resuming the things we lost. Finding comfort and hope takes many forms: a good MRI and the calming assurance of my surgeon, laughing uncontrollably at a terrible movie only I’d find funny or having the constant support of my family who never gave up on me.

I’ve learned that you don’t have to be okay every day to be resilient. Back then, I thought strength meant pretending it didn’t hurt on the inside. Now, I know it means trusting yourself to keep going, even when you don’t know what’s on the horizon.

I am doing something with my life I never would have considered, but here’s the lesson I have learned and continue to realize – adversity is painful, but can be the greatest gift in our lives. Our sense of what matters changes and brings immediacy to space for real and true connections and keeps you afloat.

Lately, I have been saying that this diagnosis has, in a very strange way, been the best thing that could have happened to me and I continue to believe that.

I’m not 24 anymore. I’m older, wiser and more resilient than ever. That, in and of itself, is something I don’t take lightly.

I have rebuilt my life into something that includes the tumor, but is not defined by it. I have found purpose in sharing this journey and helping others, whether it has been through this blog, the CTBTA, advocacy or simply telling the truth and being an open book, just as so many did for me.

For anyone that is just starting this journey, or currently in the midst of it, know this: this storm shall pass and there are calmer seas ahead. Hang tight and the wind will come.

“Adversity. You cannot direct the wind, but you can adjust the sails.”

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.”

That’s What Friends Are For

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“Keep smiling, keep shining
Knowing you can always count on me, for sure
That’s what friends are for
In good times, in bad times
I’ll be on your side forever more
Oh, that’s what friends are for…”

September 12, 2024 was the perfect night enveloped in love, compassion and courage against the backdrop of hope and strength. For those of you reading this and who attended, sponsored or donated to this year’s Brainstormin’ event, you made the night possible, and I cannot begin to thank you enough.

Had anyone told me, sixteen years ago, that I would be the CEO of a nonprofit that supports the brain tumor community, I likely would have looked at you the same way I looked at my surgeon when he told my MRI showed a massive tumor that needed to be removed the next day. Yet, here I am, stronger than ever and grateful to be in this position of giving back and providing hope to patients and their families, but also supporting this cause that remains severely underfunded and lagging behind other cancers and diseases. Despite the challenges, I have hope and am consistently optimistic that these efforts will pay off in the very near future.

With your help, this year’s event raised over $140,000 and a combined total of over $700,000 has been raised since the inaugural event in 2014! These funds will continue to support programs, such as, patient assistance programs at the various brain tumor centers in Connecticut, brain tumor research efforts, patient outreach programs, medical equipment and awareness efforts. I am humbled and grateful and look forward to continuing to grow these numbers, but what makes me even prouder is witnessing how this event has grown beyond my family and our friends, to now being a true community and statewide effort.

We started this event in 2014, after I needed gamma knife radiosurgery for a growth of the tumor and my continued hardships, as way to simply give back and to support the doctors and researchers that saved my life, time after time. With each passing year, the crowd size grew, and so did the amount. That same year, I participated in the first ever Path of Hope 5K, after meeting Tracey Gamer-Fanning and subsequently being introduced to the rest of the board members and an invitation to sit on the board. 2015 immediately presented me with another surgery, but the CTBTA was there for my family and I – they understood and were a great support system for us, and this propelled me to want to do more for them and this community to ensure that nobody else had to undergo what my family and I had endured in the previous seven years. Thanks to you, we did that, and so much more. Despite all of this, I was committed to pursuing the life I worked so hard for and which I thought I aspired to…

Every day, I remind myself that even though I am not where I thought I would be, I read the quote on the poster hanging in my office and relax, knowing I am where I want and need to be. However, I can’t sugar coat it – this job is hard, as I relive this experience on a daily basis, replaying the harrowing challenges over and over again. Yet, I am grateful for the opportunity to speak with a patient and provide a listening ear or to let them know, I too, was in their shoes, grappling with how I would overcome cognitive and physical deficits. I am grateful to support the hospitals and medical staff who dedicate their lives to treating brain tumor patients and improving the quality of care received by patients and families. Most of all, I am grateful for you, friends old and new.

Thanks to you, I have the pleasure of paying the gift of life forward. At the event, we were entertained all night by the band and with the excitement of the auction and raffle, all of us were there for one common cause – a brain tumor diagnosis. Shortly after moving the event to Stony Creek Brewery, in an unfortunate coincidence, the owner’s mother-in-law was diagnosed with a brain tumor and was being treated at Yale New Haven/Smilow Cancer Hospital. At one of her visits, I received a message from him with a picture of our event poster that was displayed on the door in her wing, along with a simple message of thanks and comfort, as the poster reminded him and his wife’s family that they were not alone in this fight. The event had grown beyond us and its reach was far wider than I could have imagined, but in the best way possible. Each year, through our June Rice Courage Awards, I have the opportunity to meet brain tumor patients, who similarly had their lives thrown upside down. They are incredibly resilient and brave, and it has been my absolute pleasure and honor to befriend them, and this year’s group was no different!

I am already looking forward to repeating this success in 2025 and hope and trust that the event will continue to grow. I hope that you will continue to support this amazing community, as you have done for so many years. We are “stronger together” and I remain excited by what the future holds for this resilient community!

I Won’t Back Down

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Another trip around the sun. But no, not for my birthday.

I view my life in two segments – pre-brain tumor and post-brain tumor and today marks sixteen years since that fateful day…

The date was July 2, 2008 and the day before, my ophthalmologist called my family and I into the office and he shared the devastating news with us. I was immediately sent to Yale where my neurosurgeon and his team were awaiting my arrival. The events were a whirlwind of emotions for us and the team did not pull any punches. My situation was dire and the tumor had to come out immediately. The emotions continued throughout the evening, as I was later greeted in my room by a priest and a nun and instantly, I took pause of my life and immediately went into fight mode, for I had no other option.

Fast forwarding to the present day, I am healthy and well. My annual MRIs continue to show no evidence of disease. My shunt continues to operate as intended and the seizures have remained at bay. To say I am grateful and blessed is an understatement, but it is with thanks to all of my family, friends and this amazing community.

Earlier this year, I was interviewed by Smilow Cancer Hospital for a featured piece on my journey and my current work with the CT Brain Tumor Alliance (the story is accessible through the link below). Over the years, the CTBTA has granted out over $1.8 million to advance research, advance awareness and support patients and families, among other things. Sadly however, in the sixteen years that have passed, very little has changed. The standard of care has remained stagnant and the prognosis has remained the same for brain tumor and brain cancer patients despite the vast advances for other forms of cancers.

At this very moment in 2008, I was in the operating room and woke up a shell of myself. Today, after having regained all of my cognitive functions, I am using my voice to help others through their journey, but we need additional help and my ask if you is this – to please consider donating, sponsoring or simply joining us for Brainstormin’ so that we can continue to move the needle and raise funding for brain tumor research and treatments. There are over 1 million Americans living with a brain tumor and an additional 94,000 will be diagnosed this year, but it doesn’t need to continue to be this way.

This diagnosis changed my entire outlook on life and has humbled me, and as I’ve said before, I would not wish this upon my own worst enemy. But yet, its lesson is simple – stand your ground and don’t back down. And don’t forget the little things, to enjoy life, do something nice for a friend, coworker or a stranger and hug your loved ones and let them know how you feel about them.

Chris Celebrates his 40th Birthday

I’m Still Standing

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While the memories are distinct and clear, it was all such a blur and in an instant, my life had changed…

The phone rang and someone in the house had answered, it was the neuro-ophthalmologist and he asked us to come in immediately. When we arrived, he wasted no time and pulled no punches.

“Chris, your MRI showed a very large mass in the center of your brain. I’ve already contacted the chief of neurosurgery at Yale NH and he and his team are waiting for you.”

Today marks fifteen years since that fateful day and I have learned so much – about myself, but also about perseverance and realizing that not much else truly matters except for family, health and happiness. I will surely celebrate and enjoy the day, but I’d be remiss if I did not take this time to reflect and express my gratitude for life and all of you.

For far too long, I had taken life for granted. I set lofty goals for myself and was determined to achieve them, but you know the story, life had different plans for me. And all these years later, I now realize and can proudly say that this has been for the better and is oddly the best thing that could have happened to me.

I found my purpose in life and am grateful to wake up every day and help patients and families undergoing a brain tumor diagnosis. Although I am not a neurosurgeon or a neuro-oncologist, I get to take my experience and share that with patients and families in need of support and guidance. I suppose it is therapeutic, but I also think I enjoy getting to use my law degree in a non-traditional way of problem solving and getting good results, be it treatment or financial support. None of this was on my radar in 2008 as I was wheeled into the OR, but life led me to this point.

Through it all, the surgeries, gamma knife, countless MRIs and the feeling of hopelessness and despair, I’ve been blessed to have the greatest support system in my family and friends…I’m incredibly lucky. I still keep in touch with my neurosurgeon, who’s become a great friend to me, as well as the many nurses who cared for me. Again, had you told me this is what would happen back in 2008, I would’ve said you’re crazy. In my office, I have a box of all my stuff from 2008 – the flash cards, ABC board, homework from rehab, my progress reports, etc. Each July 2nd, I open that box and I flip through it all, and while I still laugh at most of homework assignments, reading the progress reports, especially the neuropsychologist’s reports still jars me.

Yet, here I am, stronger than ever.

So today, fifteen years since that dreadful day, I’m still standing and I believe that my best days are yet to come. I don’t have a crystal ball to know what life has in store for me next, but I know that because of this journey and all of the remarkable people who have played a part, “I got this,” just as I said to my family that ominous morning fifteen years ago.

Come Sail Away

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My apologies. It’s been a while since I’ve posted, and this has been intentional. I realized that I’ve just needed some time to unplug from this part of my life, but apparently, life is not as ready for me to be done with this journey just yet.

About a month ago, Ashley and I were sitting on the deck, drinking our coffee and watching the birds fly around the yard, in and out of their bird houses. However, something just didn’t look quite right – did she buy more bird houses?!

My worst nightmare had manifested itself again, but I wanted to give it a couple of days to see if was allergies or just a glitch with my eyes, so I let it go. If you’ve been following this blog, you know I could never be so lucky…

Back to the eye doctor I went. This is a new eye care center that I began going to last year and my doctor was not in the office on this particular day, so I saw someone new. She began to discuss the common causes of double vision, but I did most of the talking when I shared that this was not my first rodeo. Another possible explanation that is commonly seen is over-wearing of the contact lenses, which can lead eventually cause your eye to dry and contribute to double vision. “Let’s have a look!” she said. My left eye was extremely dry and the cornea had some scratching. But my right eye was perfect, and I wear contacts in both eyes for the same number of hours each day, so this really didn’t answer things for her.

We dove back into my medical history and the medications I am on. In 2019, at the young age of 35, I was diagnosed with glaucoma, a mystery in and of itself. To treat that, I am prescribed eye drops which I take twice per day.

“It’s possible the medication is causing the dry eye, but that’s an uncommon side effect of this medication, and it’s strange that it’s one eye only.”

“Let me take a look at something else” she said. Like a scene in a horror movie, my eyelids were then flipped up to get look at my lacrimal glands – these are what produce tears. The right eye was normal, but in the left eye, there was possible innervation damage to the lacrimal gland.

Neither of us actually said the words, but I know we were both thinking it – there was, and always will be, a possibility of a recurrence. It was suggested by the eye doctor that at my next MRI, I have imaging done of my orbits, to see the inner workings of my eyes. Another mystery to solve, and when I shared this news with my family, we all said “only me.”

With many thanks to the wonderful team at the team at Yale, they scheduled me an appointment and got me in for scans last week. Double vision, double scans. Normally, I have a brain scan but this time, we added a scan of the orbits to see the inner workings of my eyes.

I think I spent more time and energy trying to keep my family calm, assuring them this was going to be fine and if there was anything there, I’d deal with it. I guess when you have dealt with this for so long, you become numb to it a little bit?

That following Tuesday, we arrived at Yale for a 7am MRI and while I lay on the cold slab of metal with the awful noises and banging from the machine, the only thing I could focus on was trying to breathe through the COVID face mask and the metal frame an inch above my face. Within a few hours, I received the long-awaited call and heard the news I knew was coming – you have a beautiful brain and the shunt is doing what it’s supposed to do. These words were such a relief to hear, but it led to the next question – why am I still seeing double then? Time will tell, as I am seeing a neuro-ophthalmologist this coming week.

None of this surprises me though – this has been the story of my life for the past fourteen years, and like everything I’ve been though, I’ll get through this and as the winds come, I will just keep adjusting the sails.

Recently, I was asked how this diagnosed changed me and I could tell by the look on the questioner’s face that my answer surprised her, but it was the honest truth. “It has been a hellish journey, but going through what I have has made me a better person and I am grateful for it.”

Like all brain tumor patients, brain cancer patients, and caregivers understand, this is, and will be, my cross to bear for the foreseeable future. No matter how positive the results, we face a lifetime of MRIs and testing, with the thought of the worst-case scenario lurking in our minds. I take solace in knowing that I have an amazing medical team looking out for me and the best family and friends any patient could ask for.

Fourteen years into this, life changed – perspectives changed. Anyone who has unfortunately undergone a life changing illness can likely attest to this, and while I would never wish this diagnosis upon anyone, this has been my blessing in disguise. No matter what, I have learned the importance of staying positive and hopeful. I now know that whatever obstacle comes my way next, I’ll keep smiling and doing the only thing I know how – maintaining a good outlook, being thankful for those around me and enjoying today.

Thank You For Being a Friend

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#2020.  Aside from 2008, this year has been the pits.  The struggles and difficulties all of us have faced continue to be a burden and we’re all hurting, so let’s hope these next three months go quickly and easily.

Nobody could have predicted the ever-changing landscape of the world we live in, but planning events and fundraising has been especially difficult.  Despite all of this adversity though, we reached our goal at Brainstormin’ thanks to the support of friends, family and the community!  Now on to the Path of Hope, albeit virtual this year, and we hope it will provide the same sense of community and togetherness as previous years.  There is still time to sign up!

Nonetheless, despite a global pandemic and civil unrest, brain tumors have not stopped and they will not stop until a cure is found, and neither will I.   Witnessing the strength and courage of the many patients and families I talk with on a weekly basis keeps me going and gives me the drive to do my part to offer assistance and provide a sounding board, but to also keep their spirits up and that hope alive.  Every day presents a new challenge, whether it is a last minute decision the day before our event to postpone due to weather so everyone can be outside, or planning a virtual 5K for the entire state of Connecticut, and for reasons such as these, finding time to write has escaped me and I apologize.  Fortunately, my family has come to my rescue and the entry below was penned by my parents – thank you, Mom and Dad.  Until next time…

As we told Chris, he has once again managed to steer the ship through adversity and roll with the punches.  

This past month has brought much reason to celebrate for Chris and our family.  We had another very successful Playing for the Cure: Brainstormin’ event at Stony Creek Brewery and appreciate all who supported again and helped Chris and the CTBTA reach their goal.  There were moments during the summer where Chris privately pondered canceling the event, but his commitment to the cause and the brain tumor community remained his driving force.  Seeing him give back and his desire to help others facing this disease gives us great pride.  He has come full circle, going from the patient to an advocate helping others.  There were hard decisions to make in planning the event though, including how many people to cap the event at to ensure each attendee felt safe and following the state’s evolving guidelines.  However, it wouldn’t be an event in which Chris was involved in without drama.  The day before the event, there were downpours and thunder and lightning in the forecast.   As my other son Stephen said following the event, Chris did his best Peyton Manning impression – he surveyed the field, stepped to the line and called an audible and then threw a touchdown in deciding to move the event to the next week without a hitch.  The evening was perfect and everyone raised a glass of Junebug and celebrated all who are fighting and remembering those we have lost.  It was a night to remember.  

The following night, Chris was honored as a 40 Under Forty by the Hartford Business Journal. 

This year’s theme was appropriately titled “Coping During Covid” and focused on each honoree’s perseverance despite the difficult environment caused by the coronavirus.  While we were sad that we could not join him and celebrate this accomplishment in typical fashion, we are very proud of his accomplishments and look forward to seeing what is in store next.  

We are thankful for each of you for being a friend to Karen and I, but to Chris as well.  As Chris said at Brainstormin’, one of the blessings in disguise about a brain tumor diagnosis are the friends you make along the way and we wholeheartedly agree.   Nobody should have to go through this journey alone and we are grateful for all your support and look forward to watching Chris continue to pay it forward with your love and support.  

Thank you, all.  

The Show Must Go On

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Dear Family and Friends,

I hope that you and your family members are safe and well during this difficult time in our lives.  Navigating the year so far has been difficult, but the uncertainties and day to day changes feel oddly familiar…

It was twelve years ago today that I underwent my first brain surgery for the removal of my tumor, but yet, it still feels like yesterday.  I remember the ride from my eye doctor to the hospital.  I remember the feeling of surprise upon hearing how large the mass was and the shock and awe of the doctors and nurses examining me.  I can remember the night before surgery, laying in the hospital bed and preparing myself mentally.  In that moment, erased were the days of being young and carefree.  Instead, I had to grow up in an instant.  I had no time to process the news I had just heard or contemplate the what-ifs.  On July 2, 2008, the course of my life changed forever, but proudly, I know this was for the better and I owe that to each of you.

As I sit here today, I look at the story of my life and career to this point.  Growing up, I never really knew what I wanted to do, but I ultimately decided to pursue law because I knew I wanted to help people and do my part to effect change.  At the age of sixteen, I landed my first job with a well-known Connecticut law firm and worked there for the next sixteen years until I ultimately listened to my heart and decided to help people in a different way.

Executing the business of the CTBTA is extremely rewarding and humbling, yet it presents so many challenges, especially now as I manage a nonprofit during a global pandemic.  We have been impacted financially and emotionally, like everyone, but yet, brain tumor diagnoses have not stopped.  Patients still need surgery, perhaps followed by radiation and/or chemo.  Some of these patients have been required to put those treatments on hold due to the risk of Covid-19 in the hospitals, while some are experiencing the isolation and enhanced PTSD as a side effect of the social distancing guidelines and anxiety about catching the virus.  Support and grief groups have turned into virtual Zoom calls, both lacking that critical personal, human element.  Difficult work, to say the least.

Nevertheless, the CTBTA has been hard at work, brainstorming ideas and holding out hope that our events will offer some in-person components.  I am constantly humbled by the generosity of the community, and wish I had additional volunteer opportunities for each of you.  So many of you have been tremendously supportive since day one, and now, more than ever, we need additional help to support our programs and our quest to advance treatments and find the cure.  Thanks to you, I am here, paying it forward and so I offer to you the chance to join me once more.

Should you wish to donate and support our mission, please visit here.   While we understand the financial stress upon us all, every dollar helps and your support will make an immeasurable difference in the life of a patient and their family.

Twelve years ago, there were no guarantees or promises made – it was “just survive.”  By now, you know my quote: “Adversity.  We cannot direct the wind, but we can adjust the sails.”

Here we are, once more, needing to adjust the sails.  I am steadfast in my belief that we will, thanks to friends such as you.

Thank you for standing by me, supporting me and cheering me on over these past twelve years.  I owe it all to you.

Have a safe and happy holiday weekend.

All my best,
Chris

I’ll Be There For You

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The minutes have blended into hours, the hours into days, and the days into months.  The end of 2019 was a blur and so far, the start of 2020 has been difficult.

During these unprecedented and unsettling times, my heart goes out to everyone, from those inflicted with the virus, to brain tumor and cancer patients alike.  And while my priority remains with the care and assistance of brain tumor patients, my deepest gratitude is with the front line workers in the hospitals around the world.  Thank you for your commitment and efforts.  Because of you, we will get through this and as a community, we are Stronger Together.

These are powerful words.  Back in 2016, when the CTBTA adopted them as our tagline, the intent was to embrace the brain tumor community.  However, these two words have quickly became the motto of many within the last month as they remind us that we can all do more to be more compassionate, more generous and more selfless.

We need to be strong for our family, friends, neighbors and strangers.  We need to be strong and supportive of the doctors working hard to keep us healthy.  And I will remain strong and continue to be a friend and supporter for anyone who needs it, but my commitment remains to the brain tumor community.

As our communities continue to adjust to the evolving conditions, one of unfortunate constants will be the diagnosis of a brain tumor. There will continue to be diagnoses of brain tumors and the consequential impact on a family’s financial situation will mount.  Fortunately for you, the CTBTA will continue to ensure that no one has to face this disease alone.  Our focus will remain on improving the quality of life for patients, survivors and their families and on accelerating the discovery of new treatments and cures.  With every new obstacle we are faced with as a result of this growing pandemic, we will adapt and respond accordingly.  Over the past several weeks, I have spoken to doctors and nurses, and have heard from families following their treatment, and am so grateful to be assured that wonderful care is continuing to be provided to everyone in need.

The month of May is “Brain Tumor Awareness Month” and all of us at the CTBTA were looking forward to kicking things off with the Path of Hope on May 2nd, as well as several third-party events geared towards raising awareness of brain tumors.  Given the current situation, with a heavy heart, we have decided to postpone our 5K until the fall.  In the meantime, we look forward to sharing details of a new campaign that everyone can participate in safely and comfortably, so be on the lookout for our announcement soon.  And although our Gray Ribbon Club and Good Grief Group meetings need to be placed on hold indefinitely, we will continue to provide hope and support in every means available.

I remain eternally grateful for your continued support and assistance and look forward to seeing everyone again soon.  Stay safe and well, and please know that the CTBTA and I are here if you need us.

Together, we will weather this storm.

 

Adversity. We cannot direct the wind, but we can adjust the sails.

Hallelujah, Hallelujah

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CTBTA_LOGO_Standard-RGBPlaying for the Cure: Brainstormin’ is 30 days away!  Along with my family and the Connecticut Brain Tumor Alliance, I am really looking forward to another great year and building on the success we’ve had since 2014.

We’ll be back at Stony Creek Brewery in Branford for this annual event that celebrates brain tumor warriors, caregivers, doctors, nurses, family and friends as we gather together in our quest to find the cure and improve treatment methods.  I cannot say enough about the staff at the brewery, including Ed Crowley, Ali and Norm – you three make this a great event, and I am humbled by you bringing additional awareness to the cause during the month of September for your Charity Wednesdays!

Thanks to our presenting sponsor, Smilow Cancer Hospital/Yale New Haven Health, we are well on our way toward surpassing our goal of raising $50,000!  In addition, thank you to Carla’s Pasta, Specialty Packaging, Saint Francis Hospital and Medical Center, Beirne Wealth Consulting, Edge Technology Services, People’s United Bank, Al Mac Motors, BMO Harris Bank, Harvard Pilgrim Health Care, Russo, Russo & Slania, UKS, Blum Shapiro, Unitas Club, Guida’s Dairy, Stop & Shop and Webster Bank!  We could not do this without you and your loyalty over the years.  A big shout out to iHeart Media for your support and partnership with us, and to Renee DiNino, our emcee for the fifth straight year – we appreciate the enthusiasm and passion you exude. 

What began as a “concert” has morphed into a fun night out, all for a great cause.  We’ll have live music by Blanket Statement; pasta prepared by our friends at Carla’s; sandwiches and wraps donated by Shoreline Cafe and Catering; the best donuts from Beach Donuts; an amazing raffle and live auction which will include two tickets next to the dugout for the Red Sox/O’s game on September 28th, thanks to Mary Beth Rossi; as well as a separate raffle for the street scooter donated by Al Mac Motors.  Better yet, we are offering anyone that buys a ticket and raises $250 in donations or through a sponsorship a three-hour open bar (just be sure to bring a designated drive or Uber for the night, please!).

However, saving the best for last is the announcement of our decision to honor and celebrate the life of June Rice who passed last December after a courageous and hard-fought battle with brain cancer.  Though I was never fortunate enough to meet June, I am blessed to have formed a friendship with her son-in-law Ed Crowley, the owner of Stony Creek Brewery, and his wife Kim.  Late last summer, when Ed shared June’s diagnosis with me, my heart broke.  Always in my thoughts and prayers, I messaged him from time-to-time and I sensed hope and comfort when he sent me a photo of our poster promoting last year’s event in her room at Smilow.  The week following her passing, Ashley and I went to see Nick Fradiani play a holiday show at Infinity Hall in Hartford.  Seated two rows in front of us were Ed, Kim and their entire family.  Unbeknownst to me at that moment was the connection between Nick and the Crowley family, but suddenly, in the middle of the show,  Nick spoke about June and his friendship with Kim and her family.  His words were strong and poignant as he paid tribute to her by singing a beautiful rendition of Hallelujah, one of the songs he performed at her services.  Along with everyone else in the theater that night, I was moved and felt the hairs on my neck stand straight up.  This memorable and beautiful moment was the impetus that brought the aforementioned idea to life.

A couple months later, I met with Kim and Ed to discuss some ideas I had for the event.  As we began talking, it did not take long for me to realize what an impact June made on her family.  I wanted to do something special and kicked around some ideas internally and eventually, I landed on the creation of the June Rice Courage Award.  This award will be presented to three patients treated by June’s surgeon, all who embody her spirit and fight, and which I hope will serve as a permanent fixture of her legacy.

Through efforts such as this fundraiser and the awareness that results, I am confident that we will move the needle, even if just a little at a time.  IMG_0289 copy Doctors and researchers are hard at work, looking to learn as much as they can about brain tumors and their genetic makeup to create targeted and precise treatments.  The day will come, I am sure of it; but until it does, the CTBTA will continue to provide hope and support, as well as funding for these important milestones.

If you have not done so yet, check out the link above to purchase your tickets and make a donation.  I hope to see you there!

Event Details

Date:  September 20, 2019
Doors Open:  6:30pm
Ticket Price:  General Admission – $40.00 through 9/19.  $50.00 day-of, if tickets remain.  Free for Brain Tumor Warriors
Live Music:  Blanket Statement

For tickets, donations and sponsorships, visit: https://ctbta.rallybound.org/brainstormin