Tag Archives: adversity

The Show Must Go On

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

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

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

The Man

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’

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

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!

A Hero Lies In You!

“You have a brain tumor.”  These were the words uttered to me that have changed my life ten years ago.  When I first heard them, I knew what it meant, but I never could have prepared myself for what my life has now become.  It is the reason my family and I began this fund and why I took on a bigger role with the CT Brain Tumor Alliance.  This weekend is the midway point – Brainstormin‘ last weekend and the Path of Hope next.

As I sit here and write this, thinking back on the night last Friday, the best way I can personally describe the night was joyous.  In my humble opinion, I think the author of this email described it perfectly: “Last night was supremely fabulous!  I found myself feeling overwhelmed with such palpable love that I am sure you felt as well.  I certainly hope so because there really aren’t adequate words to describe it.  The people around me repeatedly shared the same sentiment, so I don’t think it was just me and you.

Photos by Abigail Scott Photography 

As I stood at the front of the room, looking out to a room full of family, friends, doctors and nurses and fellow brain tumor warriors was extremely overwhelming.  Yet, because of you, this is possible!  To our presenting sponsors, Carla’s Pasta and Specialty Packaging – words are inadequate to truly let you know how I feel.  Each year, you go above and beyond what you commit to and your help in growing this fundraiser is beyond appreciated.   You made the night possible and instilled hope for continued findings.   The Carla’s Pasta food truck – great addition this year and amazing!  Thank you Heat for providing great entertainment all night long!  Thank you Renee DiNino for your eagerness to serve as emcee, you were great as always!  And to Ann Nyberg, it is always great to see you; your time and desire to be a part of this night is so greatly appreciated!  To the rest of our sponsors: ShelfSpace Marketing, Strategic Information Group, Beirne Wealth Consulting, Connecticut Public Broadcasting, Edge Technology Services, People’s United Bank, Stop & Shop, BMO Harris Bank, Sullivan & LeShane, Unitas Club, Blum Shapiro, Guida’s Milk & Ice Cream, Karmory, Webster Bank, Russo, Russo & Slania, Updike, Kelly & Spellacy, Thrive Therapy Services, Al Mac Motors, iHeart Media and WTNH – THANK YOU ALL!  To our vendors, Shoreline Cafe & Catering, Beach Donuts and Libby’s Italian Pasty Shop, thank you all.  And last but not least, to our host, Stony Creek Brewery, thank you for making the night  special and building this partnership with us.  I look forward to continuing to build upon what we have started and moving forward with our beer, which everyone loved!

So while donations continue to be made and Stony Creek Brewery has one last Charity Wednesday on September 26th, we won’t know the exact dollar figure raised for Yale quite yet, but I can assure you that you should feel proud.

The pinnacle moment of the night was when I got to share that the team at Yale is moving forward with its research project on central neurocytoma.  In a previous blog, I told you that the doctors and researchers have collected a cohort of samples and are ready for the second phase of the study, to further understand the molecular processes driving the formation of these tumors.  With the support you have provided, Yale is completing an application for funding from the National Institutes of Health on central neurocytoma in early October.  We are that much closer and it is a joint effort, one for which I am forever grateful.

So to everyone who donated and joined us, thank you again, you’re all heroes!  I look forward to sharing the grand total and additional updates with you soon.

Now, I’ll get back to final preparations for the CTBTA’s 5K next Saturday’s.  For information, visit https://www.ctbta.org/events/path-hope/event-info/.

We’re All In This Together

Ahhh, September is finally here!  And that means Brainstormin‘ is literally just around the corner.  My family, friends and I are hard at work, getting last minute details squared away and ensuring that Friday night will be one to remember.  To those who have their tickets, I look forward to seeing you there.  For everyone else, you can purchase them at the door!

I’ve been posting a lot on social media and sending emails blasts with the various updates, but here’s everything you need to know:

Friday, September 14th at 6:30 at Stony Creek Brewery.  We have sponsors; we have iHeart Radio’s Renee DiNino as emcee and Ann Nyberg of WTNH as our special honorary guest; we have the cover band Heat; the Carla’s Pasta truck will be on site; we will have a commemorative toast with beer brewed by Stephen and I; raffle and auction items that you won’t want to miss; but most importantly, updates on the central neurocytoma study that your funds have supported by surgeons at the Yale Brain Tumor Center.

In the five years that we have done this, there has been one constant and that is the support of our family, friends, coworkers, survivors, warriors and caregivers alike, as well as new faces from around the community.  Without your never-ending generosity, this would not be possible.

Because of you, I have hope.  Because of you, brain tumor patients and their families have hope.  Because of you, better treatments are being found and we are inching closer to the cure.

As a ten-year survivor, there is nothing more that I could have asked for when I was diagnosed.  At the outset, I was afraid, albeit confident.  I fought hard to regain all that I lost.  When I finally returned to my old self and came through this adversity, I knew I wanted to make things better for the doctors and patients fighting this disease.  Because of you, I found it within myself to want to champion this cause and give back.

On Friday night, come out and be prepared to have fun.  Open your hearts and your wallets and help to find the cure.  Yankees and Red Sox fans, there’s something for you; if you’re a fan of the Giants, come on out; Elton John fans! food lovers!  You get the hint – we have awesome prizes.  And someone will ride home on this, thanks to my brother-in-law and owner of Al Mac Motors who has donated a scooter every year this fundraiser has been held.

A brain tumor diagnosis is not something that anyone wants to hear.  It is not a ‘sexy’ disease and is underfunded in terms of research dollars.  But you will be helping to change that that, and I am eternally grateful.  The seeds were planted five years ago:

You Get What You Give

Are my eyes deceiving me, or are we really midway through August?  This means I’ve been on the job for a month already, and if the first month as Executive Director has taught me anything, it is that this disease is more prevalent and devastating than I think I ever could have imagined.

While fundraising and relationship building is the fun part of the job, I spend a large portion of my time meeting with the various hospitals and talking with patients and caregivers in need of support, and that is the most rewarding.  As I said when I first began this blog in 2013, I wanted to share my experience to not only meet fellow brain tumor survivors, but to be a source of hope for those who are going through this today.  I have even more admiration for our first Executive Director as I knew the job and duties covered an array of demanding and time-constraining tasks, but every day truly brings something different.

The CTBTA is proud to host the Gray Ribbon Club, a support group for patients and caregivers to meet with us to share our journeys of this disease.  We are not doctors and we are not psychologists.  But we, at the CTBTA, have all lived this disease and turned it into a positive and we want to share that experience.  Our meetings are not held in a sterile, cold hospital, but rather in an inviting setting, such as a coffee shop.  During our meeting last week, tears of both sadness and joy were shed, and nobody should feel wrong or bad about doing that.  I am overjoyed by the progress of our participants.  Witnessing the continued improvement in one particular attendee’s speech and word-finding skills causes the hairs on the back of my neck to rise.  Yet, with each celebratory round of applause, there are those raw moments where we share those dark and scary thoughts that nobody likes to talk about, but in this group, we have all been there.  As another participant shared, this is a daily battle and we need to find the joy in every day and the little things in life.  To this relentless battler – we’re here for you and you should never be afraid to let your guard down amongst us.

In addition to the Gray Ribbon Club, I have enjoyed building a friendship with one particular couple over the past month.  As young, thriving adults, their world was turned upside down when they received the diagnosis.  By a stroke of luck, we first met at a conference in June and exchanged contact information.  Later that month, I was hired in this capacity and we’ve been in constant contact since.  On two separate occasions, we met to simply talk and hopefully, allow them to forget about this hell they’ve been in even for a moment.  This family is tough and they taught me a lesson – “that there is nobody or anything in this world that can or will bring me down.”  You think you had a rough day?  Talk about resilience.

When the phone rings or the email notification chimes, I am there to respond and triage the issue, if need be.  Things that we all too often take for granted – the privilege to drive and get around; the opportunity to work and provide food for your family; our personalities and behavior, etc.  Each journey is different and with the help of our Board, the CTBTA is able to assist and through our patient assistance funds set up through the hospitals, we pride ourselves in offering hope to those in need.

For whatever tomorrow will bring, one thing is for certain – I will go home feeling a sense of pride in helping and working towards our ultimate goal of making Connecticut a center of excellence in brain tumor care.   I really couldn’t ask for anything more.

Kind and Generous

Growing up, I always enjoyed puzzles, despite my short attention span, growing frustrated as I tried to put them together.  As I sit here and write this, the irony sets in as I now view my life as one giant puzzle and slowly but surely, a complete picture is beginning to take shape.

I have my health, happiness and career pretty well set.  There’s a couple of other parts that are still coming together, but I know that’ll be only a matter of time.

As I’ve alluded to a few times, following my surgery in 2015, I was contacted by a resident at Yale who was undertaking a research project to better understand the underlying genetic alterations that cause neurocytoma.  The research lab obtained a portion of my tumor and I agreed to donate a blood sample to allow them to analyze my DNA to look for any genetic markers.

For everyone involved, we all wanted answers on this particular tumor and to immerse ourselves in knowledge about its origins, genetic markers and hopefully, how to treat it at an early stage.

A neurocytoma is a very, very rare tumor, as evidenced by the literature, or the lack thereof of this tumor type.  As such, finding an abundance of these tumors in Connecticut, or across the country, was difficult.

At the outset of the origination of The Cusano Family Brain Tumor Fund, funds were used as seed funding to help propel research efforts forward to an effective treatment of any type of brain tumor.  This past fall, when my family and I made our annual visit to Yale to present the net proceeds for 2017, a proposal was made to us that a portion of the funding be used to complete the study on neurocytoma, which my family and I emphatically agreed to.  Through the use of the funds raised through Brainstormin‘, additional samples would be obtained from around the world to allow researchers to continue to test their hypothesis.

Fast forward to June 18, 2018.  With my family, friends and sponsors at my side, we spent the day at Yale to hear the results of Phase One of this project and tour the research lab of Dr. Murat Gunel.  The day was surreal, as it was such a satisfying moment for all of us to realize the impact our dollars have made and the lives we hope to affect in the future.  It is our collective hope that no other family has to endure what we did and I am beyond thankful to our donors for their support, as well as the doctors and researchers at Yale for their dedication and efforts on this project.  “For your kindness, I’m in debt to you and I never could have come this far without you.”

I invite you to enjoy some photos and the abstract of the study prepared by the Gunel Lab, which you can hear more about on September 14th!

 

With gracious support from the Cusano Family Brain Tumor Fund, the Gunel Lab at Yale University, has begun to comprehensively characterize the genomic features of Neurocytoma, a rare type of brain tumor, that has long been poorly understood.  In addition to the Yale School of Medicine, a large cohort of tumor samples has been collected from other international collaborators, including the University of Bonn Medical School (Germany), University Hospital of Cologne (Germany), Acibadem University School of Medicine (Turkey), Bahcesehir University (Turkey), Pittsburgh University Medical Center, University of California, and the Canada Brain Tumor Repository.  Using unbiased molecular approaches, the Gunel Lab aims to understand the underlying genomic events driving tumorigenesis (formation) in these tumors.  Ultimately, the hope is that these findings will lead to the development of targeted, personalized treatment for Neurocytoma, leading to improved survival and quality of life for these patients.

To this end, the Gunel Lab has used complementary genomic experiments and bioinformatics approaches on a subset of collected samples.  With completion of the first round of experiments, they have successfully identified preliminary clues about the molecular processes driving and causing formation of these tumors.  A second phase of experiments to further understand these mechanisms is planned, with the hope of sharing their findings with the scientific community to facilitate the development of targeted treatments for this disease.  The Gunel Lab is grateful for the generous support from the Cusano Family Brain Tumor Fund, and their supporters, to continue and complete this important work for patients with Neurocytoma.

With your help, we are on the precipice of something great and I am beyond grateful and humbled by every single donor and company that has supported us year after year.  Let’s help the staff at Yale get to the bottom of this by advancing brain tumor research in an effort to ultimately find the cure.