Twenty-Four Seven, It’s A Labor of Love

Well friends – the day has come where I can FINALLY share with you the success of Playing for the Cure: Brainstormin’.  The timing is good as the news has been very negative of late, no matter which party you affiliate with.  So let me cut right to the chase and end the anticipation…

Along with my family and friends, we returned to Yale today on a happy occasion.  No MRI, no office visit – instead, we went with a check in hand with the net proceeds and I am ecstatic to share with you that, this year’s donation was $37,250.00!img_1526

As I handed over the check and in my remarks, I had a moment of reflection.  As I told Dr. Piepmeier and his fellow neurosurgeons, as well as the staff at the Yale Brain Tumor Center, but for them and without their support and care for me, as well as the assurances provided to my family, I would not be here and my family would not be giving their time year after year to raise money to support their research efforts.  It truly is a labor of love.  “Its a full time job, the work’s never done.  Twenty-four seven, it’s a labor of love.”

I have said it before, and I’m going to repeat it here.  But for our sponsors and all of those who contributed and helped to make this year such a success, today’s donation never would have been possible.  Thank you again to our sponsors – ShelfSpace Marketing, LLC, Carla’s Pasta, Specialty Packaging, Beirne Wealth Consulting, Edge Technology Services, Stop and Shop, Unitas Club, Sardilli Produce, iHeart Media, Henry, Raymond & Thompson, LLC, Liuzzi Gourmet Food Market, Guida’s Milk and Ice Cream, The Farmer’s Cow, Severance Foods, Updike, Kelly & Spellacy, P.C.,  Blum Shapiro, Al Mac Motors II, Channel 3 and WTNH.  A huge shout out to Stony Creek Brewery for not only working with us to make this event run so smoothly, but for your extremely generous contribution toward the fund.  And to every single person who came out to share in the night and celebrate with us as we raised money to  help find the cure, thank you.

Going into 2016, my goal was $20,000.  But by early June, after the sponsorship letters were sent out and the checks started rolling in, I upped the goal to $25,000.  Yet never did I imagine, or envision, being able to hand over this sum of money, but let me tell you – I am so proud to do so, and cannot express how grateful I am for each and every one of you!

Today, Dr. Piepmeier shared his continued plans for use of this money, and this includes investing this money into various research projects that he hopes will lead to breakthroughs in treatment options, as well genetic testing.

Together, with the support of the Yale Brain Tumor Center and other facilities throughout the world, the cure to brain tumors will be found.  However, until that time, I remain committed to putting together this fundraiser for Yale as a way of saying “thanks” for saving my life and giving me a second chance at living.

I am forever grateful for my family and friends who got me through these dark days and allowed me to pick myself back up and continued on with my life.  But I am also thankful that you have helped me to explore and find my passion, and that is being an active part of the brain tumor community.

Walk This Way

One step at a time…

Last week, over 700 brain tumor patients, survivors, caregivers, family, friends and doctors walked and ran in the Path of Hope, a 5K to benefit the CTBTA.  As with all events, there were obstacles to overcome but that did not stop us.  The new venue worked perfectly and I heard many great compliments.  Additionally, we were faced with another event taking place on the same day and at the same location, but this too did not make an iota of a difference to our dedicated group of volunteers who adjusted to each punch thrown.  I saw determination and a desire to make this event just as great, if not better, than the previous two years.   Proudly, we can say, that goal was accomplished.

We had an impassioned speech from our President Emeritus and a beautiful rendition of the National Anthem.  New this year was a true 5K timed run to give those who wanted that experience and it was a success.  The walkers were located within the confines of the village and as each team came around the turn, I saw nothing but smiles, belief and hope.

The most incredible part of the entire of the day was witnessing the brain tumor community come together, and it is truly awesome to witness.  Never could I have imagined that there would be this community, let alone people who wanted to come together and celebrate their journey in what they have overcome or are currently facing.  Whether it was meeting Elli Haskes, a fifteen year old student whose mother passed away from brain cancer when she was five and who set up a table to collect items to create care packages for children whose parents have been diagnosed with a brain tumor, or Steve, an inspirational survivor whom would never let on that anything was wrong, and his caregiver Wendy, who radiates with positivity.  And to greet all of the patients and survivors, there was Supercow, img_1223the very animal I named in the hospital when my parents asked me who my dog was.  The handshakes, hugs and tears we exchanged are moments I will not forget and are the reason that I do this.  Thank you all for being there.

When I think about all the time and work that went into the event by everyone involved, it was all worth it as  I saw the joy that it brought to everyone.  The day was about raising awareness of brain tumors and doing our part to help find the cure.  It sounds odd, but there is truly something special when you have the chance to actually celebrate brain tumors with an amazing community of people whose lives have been affected by this awful disease.

Whether your tumor is malignant or benign, it is still a brain tumor and the effects are equally as devastating.  The best advice that I was given, and which I now give to you is simple.

Take it “one step at a time.”  There is not a day that does not go by where I do not think about it, or reflect upon how grateful I am, but to Ashley, my family, friends and all supporters – thank you for all you have done, and continue to do for me.  You have allowed me to take this and turn it into something great, and I am grateful.img_1452

Oh What A Night

The third Playing for the Cure: Brainstormin’ is in the books and has truly set the bar higher for the future of this event.  There is so much I want to talk about that it is difficult to determine where to begin.  I know the number one question everyone wants answered is “how much was raised?”  While I wish I could tell you, donations are still trickling in and the final accounting has not yet been completed; however, I am ecstatic to share that we have shattered the amounts donated the first two years!  Thank you to each and every person who attended, bought raffle tickets, participated in silent auction, partook in the live auction and my lucky cousin Xander, hope you enjoy that scooter!  A big thanks to you all!

The night would not have been possible without our annual sponsor ShelfSpace Marketing, LLC and our presenting sponsors Carla’s Pasta and Specialty Packaging.  I was, and still am, in shock by what I witnessed.  The lovely and wonderful Carla Squatrito, the Founder and President of Carla’s Pasta, surprised my family and I by chartering a bus of 40+ people to the event.  Words alone cannot express how grateful and surprised I was for this support, and I know that I speak for my family as well, how greatly appreciated and generous this gesture was.  Also joining us was Chris Orsini, the Managing Partner of Specialty Packaging, along with his wife, Linda. To both companies, I cannot express my sincere gratitude in helping to make this year the success that it was and for your show of support of this cause and dedication to helping find the cure.

Thank you Beirne Wealth Consulting, Edge Technology Services, Stop and Shop, Unitas Club, Sardilli Produce, iHeart Media, Henry, Raymond & Thompson, LLC, Liuzzi Gourmet Food Market, Guida’s Milk and Ice Cream, The Farmer’s Cow, Severance Foods, Updike, Kelly & Spellacy, P.C.,  Blum Shapiro, Al Mac Motors II, Channel 3 and WTNH: you made this night possible and are giving hope to those battling a brain tumor diagnosis.  And to every single person and company who donated an item for the raffle or auction – THANK YOU!  Also, a huge thank you to Jillian Shugrue who reached out to me and donated her photography skills and time to photograph (and video) the evening – you did an amazing job!

But what would the night have been without the music from the talented duo Ja2M and the awesome Wise Old Moon?  Your time and skills were so greatly appreciated and I only hope that you enjoyed yourselves as much as everyone enjoyed your sounds.  I hope it was evident from looking out into the crowd how much the crowd enjoyed you guys – I received many great compliments on both bands, so hats off to you!  When I think of the future of this fundraiser, I have longed for a true “festival” with multiple bands and styles of music and you both got the ball rolling in that direction.

In addition, I’d like to thank and recognize Stony Creek Brewery, our host and tremendous partner in this fundraiser.  I am humbled by your support and willingness to partner and work with us throughout the planning stages to the day-of coordination.  Additionally, I would like to thank Ed and Ali for their extremely generous contribution during the month of September.  You took me by complete surprise when you informed me of Charity Wednesdays for the month of September and never could I have imagined such a generous contribution and act of kindness.  You were both so accommodating and great to work with –  I thank you again, and look forward to next year.

Last but not least, and most importantly, a BIG thanks to the Yale Brain Tumor Center and especially, Dr. Piepmeier.  As noted in his remarks, the morning of the concert, Yale went live with its new addition to the website intended to educate patients, survivors, caregivers and families.  The addition of Brain Tumor Patient Education consists of a wealth of links and information put together by doctors, nurses and myself to assist and guide anyone diagnosed with a brain tumor, or their family, through this long journey.  When I was released from the hospital in 2008, I had nowhere to turn nor anybody to talk to about what I was feeling.  As I told the staff at Yale, they needed to give patients and families a place to turn to for answers to questions such as “where do I go from here?” and to provide them with an assurance that they are not alone and provide resources, and “Life After a Brain Tumor” should give some insight.  Collectively, you all changed my life, as well as that of my family, and I could not be happier than to host this fundraiser for you.  I am excited to discuss with you how you plan to use the money donated this year and what breakthroughs you think may be on the horizon, while further enhancing the website.

However, for me, the best part of the night was seeing and meeting fellow brain tumor warriors and survivors and their families.  To be able to put a name to the face, or to meet someone for the very first time and hear their story and let them know that they too can get through these hard times is all that I strive for.

Fortunately for me, I am now cured of this tumor but that does not mean my battle against brain tumors is over.

It is just getting started…

See You In September

FullSizeRender (3)Goodbye summer, hello fall.  And as much as I enjoy summer, September is my favorite month – our anniversary, the start of Fall and cooler temperatures, football season, autumn leaves, etc.  But fall also means that winter is just around the corner and that truly depresses me,   UGH!  So I look on the bright side – Brainstormin’ is just 15 days away!  I would be lying if I said that I was not excited about what lies ahead in the immediate horizon, and in the coming months.

Tomorrow night, the CTBTA is hosting its second annual Night of Hope, a farm dinner at the beautiful Rosedale Farms & Vineyards in Simsbury.  I have been to several farm-to-table dinners and by far, this was the best one I had ever been to, so the expectations for tomorrow are high!  Also coming soon is the new website for the Yale Brain Tumor Center, which was a collaborative effort with nurses, care coordinators and doctors at Yale.  Not long from now, this new website will be revealed and hopefully be a tool and be a resource for brain tumor patients, survivors and caregivers.  Next week, the CTBTA reconvenes its business and we’re hosting brain tumor patients, survivors and caregivers for Brain Tumors and Cupcakes at NoRA’s Cupcakes in West Hartford, CT.  We’ll also meet as a board to make our allocations to hospitals and brain tumor programs throughout the state.   Then, in October, we’ll be walking on the Path of Hope, in a new location this year (Olde Mistick Village).

And of course, Brainstormin’ on September 16th.  As some of you already know, we received another great surprise earlier this week when the owner of Stony Creek Brewery informed me of Charity Wednesdays at the brewery.  To put it simply, every Wednesday, the brewery donates $1 per every beer sold to a designated charity.  The idea proposed by Stony Creek was that, during the entire month of September, every Wednesday’s charity night would be designated to the Yale Brain Tumor Center to assist our fundraising efforts. Humbled and appreciative, I graciously accepted this idea, but more than anything, I am proud in knowing that the work I am doing is not going unnoticed.  To be able to help the doctors and staff who saved my life so they can continue to develop research and continue saving lives means more than anything, and to see the generosity of businesses and individuals wanting to contribute is awe-inspiring.  As I told Yale when I shared this news, never did I think that eight years ago, I would find anything positive in this whole experience, but everyday I continue to be amazed and inspired.  Thank you Stony Creek Brewery for joining us as a partner in this quest to find the cure!

Thanks to all of our corporate and individual sponsors for your support.  We are close to this year’s goal and remain hopeful to hit and surpass it, but we can still use your help.  It is a night that you will not want to miss, so contact me for your ticket before they’re gone.

I look forward to seeing all of you on the 16th and encourage you to help find the cure by visiting Stony Creek on Wednesdays during the month of September.  I also look forward to seeing you at some of our upcoming events as well!

Cheers!

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The Best Is Yet To Come

Hope that everyone has been enjoying their summer, whatever you may be doing.  But with the end of summer getting closer and closer, that means September is nearing.   However, September brings Playing for the Cure: Brainstormin’ fifty days from today!2016 Poster

Thanks to all of our sponsors (special thanks to our annual sponsor ShelfSpace Marketing, LLC, as well as our presenting sponsors this year, Carla’s Pasta and Specialty Packaging), family, supporters and the committee assisting us this year, I am excited to announce that we have already surpassed the amount donated in each of the previous two years!  With an exciting new venue, two great new bands and a tremendous raffle, the excitement is hard to contain.  As you know, we are holding the concert in the celebration room of the Stony Creek Brewery.  Gone are the days of drinking Pabst Blue Ribbon and on to their craft brews.  And if beer is not your thing, they serve wine too.  If you think you might be hungry, worry not because this year, we are including a $10 food voucher!  Every weekend at the brewery, they have local food trucks come, so there will be something for everyone.  The brewery has been great to work with and I am excited to see our event come to life there!

As mentioned in a previous post, our bands this year are Ja2M and Wise Old Moon.  These bands are the perfect fit for this venue and are sure to please everyone in attendance.  In addition, we have a tremendous raffle and auction full of awesome items donated by sponsors, friends and colleagues.  Just to name some, we have two raffles: one for our grand prize, a 50cc gas street scooter, and the other raffle contains prizes such as a foursome of golf to play a round of 18 at one of two courses at Lyman Orchards, tickets to the Goodspeed Opera House, tickets to a UConn men’s basketball game, gift baskets, gift cards and many more.  Some of our auction items include an Eli Manning autographed jersey and a dinner for eight at the winner’s house prepared by the chefs at Carla’s Pasta.

But most importantly, by coming or making a donation, you will be helping doctors, surgeons and researchers find the cure for brain tumors.  To help a family and spare someone else having to go through what my family and I went through is what this is all about.

I’m not one to ask for much, but please, support this cause and come join us for a beer, some good tunes and some great food at the Stony Creek Brewery!  Hope to see you in 50 days!

For tickets, email me at chrisgreymatters@gmail.com

Can’t make it, but still want to contribute?  Visit http://www.cusanosagainstbraintumors.com

I Wish That I Knew What I Know Now, When I Was Younger

Screen Shot 2016-06-29 at 9.37.10 PMHot dogs, burgers, beer, cookouts, fireworks and independence – all typical thoughts of the 4th of July (there is still no better memory than this photo from last year’s 4th of July getaway to Puerto Rico).  For me, my thoughts this holiday weekend will always be a reminder of my journey and battle.  In the blink of an eye, maybe not for all, my family included, this weekend will mark eight years since it all began.  I still remember it vividly, being wheeled into the OR on July 2, 2008.  Will I see my family again?  Will I remember everyone’s faces?  Will I be able to speak?  The list of questions goes on and on, but I knew it was my only chance of living, so this weekend, I will be rejoicing.  More importantly though, the past eight years have shown me how to live and what truly matters.  There have been many bumps in the road and unexpected twists that I did not foresee, all of which caused me to reexamine my life, my dreams and the ultimate pursuit of happiness, but I am still exploring and figuring it out.

At age 24, I was so focused on my life and pursuing my dreams, all to make as much money as possible.  Before starting law school, right through year one, I was, and still am to the extent I can be, overly ambitious.  Growing up, I saw my parents dedicate their lives to their children.  Whether it was Anheuser-Busch and driving back and forth to New York every day, Eagle Snacks, President of Cape Cod Potato Chips, followed by owning his own company, ShelfSpace Marketing, LLC, while simultaneously serving as the General Manager of Carla’s Pasta, my father was, and still very much is, a hard worker.  My mother is just as incredible, a true inspiration.  She not only raised my siblings and I, but she also taught us values and how to be a good person; she took care of the house and kept it spotless; always had breakfast, lunch and dinner ready – never failed; managed to drive all of us to lessons and appointments.  Remarkably, she did much of this while battling and beating breast cancer and never missing a beat, and is now a para-professional at an elementary school.  They always told my siblings and I: “hard work pays off.”

However, my life changed drastically between the ages of 24 and 32 and I am still waiting for my big break.  Life has been a struggle since my diagnosis – surgeries, extended hospital stays, cognitive rehabilitation, physical rehab, etc.  In addition, and as you know, I have struggled with passing the bar exam.  I still have sky-high medical and student loan bills that I have yet to make even the smallest dent in because I’m not using my JD as I envisioned.

Yet, I am still smiling because all is not lost, not even in the smallest sense.

If this ordeal has taught me anything, it is that life does not go according to plan.  Life throws you curveballs and you have to adjust accordingly.  Sure, I could have packed it in after that semester off and thrown in the towel, but I wanted to prove to myself, and any doubters, that I could excel and earn my degree.  However, what I did not know was that the initial three surgeries would not be the end, as seizures ensued, followed by a shunt revision, gamma knife surgery and one more craniotomy.  But I followed my heart and did what I wanted and have absolutely no regrets about how the past eight years have unfolded.

At 32 years old, I look at my life in quarters – the fourth quarter was pure hell.  It presented me with challenges and hardship, but now, with my renewed lease on life, I am restarting the clock and have an opportunity to explore new avenues and opportunities that perhaps would not have been possible had I gone down the path to being a lawyer.  I have been part of some great conversations of late, some of which are right under my feet.  I intend to continue exploring alternate opportunities with my firm; I just collaborated with the staff at the Yale Brain Tumor Center on content for its new website; I have been working with the Director of Special Events at Yale University on Brainstormin’ and am open to exploring opportunities there.  On the nonprofit side of things, I am the Vice President of the CTBTA and am intrigued by what the future there may hold.  I did not know how much I enjoyed fundraising and development, but it is an area that I truly enjoy, especially for a cause that I am so passionate about.

As I continue to reinvent myself, I get down on myself from time-to-time, due to what I perceive to be, “failures”.  Yet, at the end of the day, I am reminded that I still have all that is important.  As odd as it may sound, I feel blessed to have been dealt this diagnosis, as it made me a better, stronger person and has opened new doors and opportunities for me to pursue.  I am exploring life and doing things I never thought I would do.

On Tuesday, I was interviewed by iHeart Radio and was asked, “How has this experience changed your life?”

To try to answer that concisely was difficult, but as I told the interviewer, these past eight years have been eye-opening, causing me to reexamine how I live my life and taking nothing for granted and never losing hope.  We should all strive to live in the moment and not lose sight of what is important – family, health and friends.

“I wish that I knew what I know now, when I was younger.”

I’m Walking on Sunshine

Today, I walked into Yale New Haven Hospital for my six-month MRI feeling anxious and a little uneasy, because, after all, it is Friday the 13th.  However, deep down, I was confident because I have the best surgeon ever, and I walked out the happiest man on the face of the Earth.  And after eight long years, five operations and one gamma knife surgery, the stars have aligned and it appears that I am now DONE battling my brain tumor!

You pick the adjective – relieved, ecstatic, thrilled – I’m it.  Today’s scans showed nothing, other than a normal looking brain.  Sure, my neurocytoma might have given me a battle at times and it even attempted to break me, but, I win.

I honestly don’t know where I would be if not for Dr. Piepmeier and the staff at Yale.  For a quarter of my life, I have relied on him as my surgeon, allowing him to use scalpels and God only know what else inside my brain, but he has also been a friend.  He has supported me in everything I have done, including rehabilitation, my pursuit of my juris degree, my attempts at the bar exam, supporting my family’s fundraiser and creating a fund at the Yale Brain Tumor Center for us.

The gravity of this morning’s news has not quite sunk in yet, but I know it will.  Ever since I was diagnosed and survived, I knew I had a new lease on life, but this news serves as the assurances I have longed for.GR4ZD00Z

I am not a survivor, but rather a warrior. I overcame some very scary days, but I am alive and able to share my story.  So, I am going to give back and continue advocating for the cure and fundraising to help the doctors and researchers who saved my life.  I would never have imagined that I would take this entire experience and turn it into something good, or into something that I even want to discuss, but it is a cause I care so deeply about.  I want to do as much as possible to help find the cure to brain tumors, and bring hope to the warriors battling.

Thank you family and friends for your continued support and reading about my journey – I cannot wait to see what lies ahead for me!

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