Tag Archives: brain tumor research

Luck Be A Lady

Life is unpredictable.

As my childhood habit of walking around with a briefcase clearly indicated, my career path was assumed from the beginning.  My high school job at a law firm, political science degree from UConn and  admission into law school only solidified my determination.  Well, surprise, surprise.   A brain tumor, a few failed attempts at the bar exam and a new-found interest in fundraising later, I found myself walking out of the law firm I worked at since I was 16 for the last time.

For my readers who do not already know, I recently joined the United Way as a partnership manager in development.  I am grateful to my former employer for taking a chance on me as a junior in high school and grooming me to succeed in anything I set my mind to.  Through my ups and downs and all of the trials and tribulations, they supported and encouraged me.  Who knows though, maybe it was meant to be?

During my first few weeks at the United Way, a lady stopped by and after her second visit, left me literally speechless.  She was not there to give me business or build upon a relationship though; her red and black outfit gave her away, my ladybug was back.  Her first appearance was when my office neighbor walked in and showed me who flew onto her hand – not even knowing my story or the connection.  The next week, there she was again, perfectly propped on the wall.

Immediately, any second thoughts melted away and I knew that this was a sign that I had made the correct move for my career.  Prior to accepting this position, I knew that a career change was necessary and would allow me to fulfill my purpose in life.  But giving up something that I had worked so hard for and that this story is so connected to was difficult.  Yet, her presence in the office gave me the assurance I needed.

The change from the private sector to the nonprofit world has been difficult at times and the road to mastering the skill set I need to succeed will be long and challenging.  However, I am eager to make a philanthropic impact on my community and to simultaneously fine-tune my ability to have a personal impact on the brain tumor community to help all the doctors, researchers and nurses who care for patients.

I have not had the opportunity to meet with the department Chair or the resident overseeing the study on central neurocytoma at Yale, but am eager and excited to see what they have learned.  I am humbled that in 2018, ten years after my diagnosis, a study will be published and a resource available for the next patient diagnosed with this very rare tumor.  Through the Cusano Family Brain Tumor Fund and through the many donations received from my readers, we are funding this important research study and collecting samples from another major university.  Back when I was diagnosed, there was not an abundance of information on this rare tumor.  Gratefully, we are on the brink of making this a reality.

My passion and pursuit to help those in need will not stop here though.  I trust that the skills I develop in my new position will allow me to make a greater impact and give hope for anyone diagnosed or who is facing this dreaded diagnosis.

Everything happens for a reason and I am content with where I am.  Though it took me nine years to come to this realization, I understand and believe that I am not an attorney for a reason and that I got sick so that I can help people.  More than anything though, I thank the ladybug for making her appearances and assuring me that this was the right move and for her continued presence in my life.

I’m On Top Of the World

 

What can I say!  I am humbled and blown away by the outpouring of love and support from so many.  To our Annual and Presenting Sponsors ShelfSpace Marketing, Carla’s Pasta and Specialty Packaging LLC. for making this night the best yet!  A HUGE thanks to Renee DiNino and iHeartRadio for being our emcee and giving us amazing coverage!  A very special thank you to Sullivan & LeShane Public Relations, Inc. and WTNH News 8 for sponsoring and bringing great awareness to this cause.  And while the list is too long, a big thank you to all of our sponsors who made the night possible and enabled us to pull this off.  Thank you Stony Creek Beer for hosting us again and your support during the month of September – you guys are great!

Nine years ago, I never would have thought I would want to talk about brain tumors, let alone that I would find it my passion.  As my doctor told you last night, I am cured of this and now it is my opportunity to give back and aid doctors and researchers find the cure, but to also be a ray of hope for those fighting this battle. Fortunately, we are on our way.

While we are not ready to share an exact dollar amount, I am pleased to share that we shattered last year’s efforts!!  Together, we took another step forward in helping doctors at Yale find the cure and I believe we will see the day.  And if you thought last night was a great time, get ready to celebrate my 10 years of survivorship in 2018!!  Get ready Cusano clan!

Thank you everyone! Check back soon or visit cusanosagainstbraintumors.com.

Changes In Latitudes, Changes In Attitudes

Another fun Cusano family vacation to Nantucket is in the books!

Whether it was on the beach, out walking around town, paddle boarding (yes, I did it!) or at Cisco Brewery, I was happy and carefree.  It is great to just wake up with no pressures – no phone calls or emails to respond to, no meetings to attend.  I definitely need to reward myself and take advantage of the time that I am afforded to do this more often.

However, I’d be lying if I did not acknowledge the moments where my mind wandered and I caught myself thinking about the past and the adversity I have overcome to get here.  It wasn’t feelings of sadness or depression, but rather, joy and jubilance.  If you had told me back in 2008 I would be riding a paddle board in the ocean, traversing through massive yachts, I would have told you that you were nuts. For the past nine years, nothing has been perfect – be it law school, the bar exam, seizures, weakness or more surgeries.  Yet, this week was an exception.

All of this made me realize that everything in life is in flux and nothing is permanent.  I watched the waves rush in and then wash out.  Ferries dropped people off and then came back to pick people up to bring them home.  As I sat on the ferry home, I realized that nothing is constant – we cannot bottle up good times and moments to take them home, but we can certainly savor them.

I said it earlier, and I’m saying it again – nothing in life is permanent.  While this may sound negative, it is not because it is reality. Just like life on the island, everything comes and goes.  The good, the bad, you have to just keep paddling.

As I learned at an early age, life is short and should not be taken for granted, so live it up.

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.

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…

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’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!