Tag Archives: support

Sailing

Leave a comment

“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

Leave a comment

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

Leave a comment

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…”

Thank You For Being a Friend

Leave a comment

#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

Leave a comment

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

3 Comments

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.

Blessing in Disguise

Leave a comment

“It’s the scars that make you stronger,
It’s the hard times that make you wise,
It’s the sweet things only time brings,
That arrive like a blessing in disguise.”

You know the story, but eleven years ago, I was fearful and afraid, unsure if I would wake up from surgery, or what my life would be like afterwards.  Yet, things have worked out very well and after another amazing night at our sixth annual Playing for the Cure: Brainstormin’ event on Friday night, I can one-hundred percent say my diagnosis was a blessing in disguise.

As I stood at the podium and looked out to the crowd, all 300+ of you, I was overwhelmed, humbled and proud.  This was our largest crowd ever and I am so glad to see this event continue to grow and help others.  It wasn’t until after I was diagnosed that I heard and met so many people and families affected by a brain tumor and for you to come and be a part of this special event was fantastic to see.  I got to meet many of you and hope you know that you are now part of a special community with individuals who truly understand and get it, so I welcome you into the CTBTA family.  We’re gaining momentum and with special thanks to all of the media outlets that supported this event, especially the Hartford Courant, WTIC-1080, WTNH and WFSB, we will continue to expand our footprint and reach and raise awareness.

On behalf of the CTBTA, I had the distinct pleasure to honor and remember the life of June Rice by awarding three inspiring brain tumor survivors with a “June Rice Courage Award.”

Darcy, Steve and Cesar – I hope you are as proud of yourselves as the CTBTA and I are of you.  You have demonstrated such strength, resiliency and bravery and are an inspiration to everyone.    Thank you for allowing us to share your story and spread hope.  Continue fighting, and know we are always here to support you.

Kim, Melissa and your entire family – what a pleasure it was for us to honor June.  You made your mom so proud with your heartwarming speech, there was not a dry eye in the room.  Though her and I never met, I am grateful that we have connected and hope our friendship will last eternally.  As you vowed to me, you and your family have my absolute support and friendship today, tomorrow and always and we, the CTBTA, are here to support you all.

To all of our sponsors, especially the Yale Brain Tumor Center at Smilow Cancer Hospital , thank you for your tremendous show of support.  I am, and will always be, eternally grateful to you for returning me to good health and helping me find my voice in the quest to work alongside brain tumor centers in the state to help others and ensure that no family goes through what we endured in 2008.   A giant thank you to our Platinum Sponsors, Carla’s Pasta and Specialty Packaging; our Gold Sponsors, iHeart Media and Harte Auto Group; Silver Sponsors included Saint Francis Hospital and Medical Center, Beirne Wealth Consulting, Women on Wealth, BMO Harris Bank, People’s United Bank, Al Mac Motors, Harvard Pilgrim Health Care, Edge Technology Services; thank you to our Bronze Sponsors including Russo, Russo & Slania, Guida’s Dairy, UKS, Blum Shapiro and Unitas Club; and Friends of Brainstormin’ Stop & Shop and Webster Bank.  Events like this succeed because of you, and we hope that you will continue to support us until our mission has been fulfilled.

Friends, old and new, from the bottom of my heart, I thank you.  Erienne and all of the members of Blanket Statement, thank you for joining us and being a part of this memorable occasion, you were amazing.  We also want to thank Carla’s Pasta and Shoreline Cafe and Catering for donating all of the food, and to Beach Donuts for supporting us.  Last but not least, to our partner and friend, Ed Crowley and the staff at Stony Creek Brewery, I appreciate all of your support, enthusiasm and compassion for our cause.  I look forward to sharing the amount we raised with you soon, and planning for 2020 very soon, but until then, let us rejoice and celebrate this achievement.

“It’s the sweet things only time brings,
That arrive like a blessing in disguise.”

The Man

10 Comments

I took last night to let the news sink in, or at least I tried to, but yesterday’s news brought too much excitement.  I knew the day would come and I was optimistic, but I have still yet to process it.  Yes, yesterday I received the best news ever from my medical team at Yale .  After 11 long years of battling this beast, starting at age 24 which required 5 surgeries, radiation, an onset of seizures and pretty much uprooting my life and changing the course of my career, albeit I am grateful – I am officially “tumor free!”

Upon seeing my doctor walk into the room, my heart sank and I got a pit in my stomach, fearing something was wrong.  Fortunately, that was a fleeting fear as he quickly sported a big smile, proudly pronouncing “It’s gone, my friend!”  Simultaneously, Ashley and I both exhaled a big sigh of relief as smiles ran across our faces.  In an instant, the realization that I had won the battle set in because though my tumor was benign, given its chemical makeup and the history, I knew there was always a chance.   Yesterday however, those fears vanished when I heard he was 100% confident and certain that the tumor is gone forever and looking at the scan myself, seeing nothing but brain and a working shunt, a song ran through my head:

“Somewhere I heard that life is a test
I been through the worst but I still give my best
God made my mold different from the rest
Then he broke that mold so I know I’m blessed”

For more than a decade, my life has been anything but ordinary as I was always hesitant and wondering “what if.”  But now that I know I have five years and with the best doctor out there, I  know this is behind me and I owe it to you, especially my parents.  You have all supported me in the darkest of times, when I thought I would never recover to be able to speak, read or write again, or that I would ever regain the strength lost on one side of my body, and for that I am forever grateful.  So to show my gratitude, I am resolved to pay it forward and help anyone fighting this diagnosis and in need through the Connecticut Brain Tumor Alliance.

When I first joined the CTBTA, I was fortunate to meet Tracey, Greg, Jen, Andy, Stacey, Ron, Kim H., Susan, David, KC, Maria, KPD and Terry.  Since then, the Board and organization has grown and new members have joined, as has our footprint and impact on the state.  But I want to recognize the founding members for taking the chance in starting this organization so that patients, such as myself, don’t have to battle this alone.  I am incredibly grateful for the introduction to you and thank you for embracing me with open arms, welcoming me to the Board and allowing me to rise the ranks to your Executive Director.   Together, we can and will, make Connecticut a center of excellence in brain tumor care and be the resource that new patients and families need.

Thank you all, from the bottom of my heart.  So as one chapter closes, a new one begins…

Don’t Stop Believin’

1 Comment

Where has the time gone?   Admittedly, and my apologies to all of you, but since starting my new position, my blogging has gotten away from me as I have needed to give more of myself to the position and to get my feet under me.  However, with this work, my commitment, passion and dedication to the cause has only grown.

Santa responded favorably to my list, but the end of 2018 was still difficult.  As the Board and I continued to process the loss of Tracey, the strongest brain tumor warrior I have ever met, I kept asking “why?” but remained committed to the fulfilling our mission.

During our first Board meeting in 2019, a common thread formed – though we were collectively hurting, our commitment and dedication was unwavering.  The CT Brain Tumor Alliance will continue to assist patients and families, serving as a resource to bring awareness, hope and partners together to find the cure and help everyone facing this diagnosis.  The passing of Tracey has been very difficult, but I am so proud of her family, friends and our Board, all of whom are resolved to continue her legacy and push the needle further in helping to make Connecticut a center of excellence in brain tumor care.  I previously mentioned the picture in my office of her and I, and upon arriving every day, I look at it for my inspiration and hope that I can make half the impact that she did.  So, to that end, Connecticut, get ready.  The CTBTA is coming for you and we are moving full speed ahead with two great events on May 4th to kick off Brain Tumor Awareness Month.

In the morning at beautiful Elizabeth Park, which Tracey loved and adored, join us for our annual 5k, the Path of Hope.  If you’ve been to a previous Path of Hope, you have witnessed the beauty of seeing brain tumor patients, their caregivers, families and friends come together for a day of celebration, remembrance, passion and hope.  Building off our recent success last September, we are proud to bring our flagship event to May and begin this great month with a bang.  For further information and to register, please visit: https://www.ctbta.org/events/path-hope/event-info/

Also on May 4th, the CTBTA is proud to host “A Night in Paris.”  This special, one-time event is a dedication to the life and memory of Tracey.  An admirer of all things French, this memorable event will be filled with exquisite French cuisine, an exciting raffle and auction, all cast under the Eiffel Tower and French street signs in the place she loved the most.  Please join us to continue Tracey’s legacy of helping others and giving back.  Along with the members of this fantastic Committee and the CTBTA, I hope to see you there and encourage you to please attend if you can, or purchase a ticket for the benefit of a survivor whom Tracey treasured dearly: https://www.ctbta.org/events/night-paris/

There are just under three weeks from the big day and the excitement and pressure is mounting.  Sure, two events in one day may seem insurmountable to some, but I am determined to make it an exceptional day.  Thanks to our many sponsors who are supporting these events, all of the participants currently registered, and our dedicated group of volunteers, it is our commitment to bring hope to all who are fighting and allow the hospitals we partner with to continue their advancements.  May 4th, 2019 will be remembered as a day of mutual celebration where we all rejoiced and said “we did it!”  Here’s to you Tracey.

So Here’s My Lifelong Wish, My Grown Up Christmas List

1 Comment

Dear Santa,

As children we believe
The grandest sight to see
Was something lovely wrapped beneath the tree
But Heaven only knows
That packages and bows
Can never heal a heartached human soul
No more lives torn apart
That wars would never start
And time would heal all hearts
And everyone…

It’s been a while since I wrote you and I’m taking a leap of faith as I  write to you again this year, but what do I want for Christmas???

Well, since you asked, here it is.  It’s a bit unusual, but it’s my grown up Christmas list.

This past year, I was named the Executive Director of the CTBTA and the position has been extremely rewarding and fulfilling.  I truly believe that in the not-too-distant future, our state will be a ‘center for excellence’ in brain tumor care and treatment, but there is much work to be done and maybe you can help!  So, here goes nothing…

First, please help the hard work of our organization so that we may continue to enable the doctors and researchers to advance treatment methods.  Brain surgery is certainly not fun and takes months, if not years, to fully recover, so we want to see the day that surgery can be less invasive and to continually improve the standard of care for brain tumor patients.

Next, we need more clues and positive results to understand the drivers and causes of a brain tumor.  Help us to understand the underlying cause of a brain tumor so that the doctors and surgeons could take proactive measures to treat this disease.  Completion of this will help bring us my third wish, the cure!

Fourth, please bring those who are suffering comfort and support.  Whether they are recently diagnosed; a brain tumor warrior; a caregiver; or a parent, friend or family member of someone who is battling this diagnosis or coping with the insurmountable loss, everyone needs additional help and hope.  We pride ourselves on doing the best we can do provide hope and support, but our reach only goes so far and additional resources are needed.

Finally, the brain tumor community could use more joy and laughter.  This is a difficult diagnosis to cope with, but hope, laughter and joy are the best medicine.

I know this is a lot, and you might not be able to help with everything this year, but it would mean the world to all of us in the brain tumor community if you could help in any way possible.  I’d appreciate it!

Thanks,
Chris

p.s. I’ll leave cookies and milk!
p.p.s. Don’t forget gifts for Ashley and Coddington!