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Hallelujah, Hallelujah

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

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

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

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

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

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

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

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

Event Details

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

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

Someone Saved My Life Tonight

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Okay friends, it’s March already and that means Playing for the Cure: Brainstormin’ is quickly approaching!

Through the Musicians of North Haven, fundraising is underway for a benefit concert at Stony Creek Brewery on September 16, 2016. In partnership with the Yale School of Medicine, I am pleased to share with you that all donations are now tax deductible.   As in the past two years, one hundred percent 3e7dd804-0f3c-469d-9f2c-7fb03c8d7b08_w744_h420of the profits will be donated to The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.

First things first though – I’d like to answer a couple questions I often get asked:

What exactly is The Cusano Family Brain Tumor Fund?   The concept of the fund was first  announced by my surgeon during our first Brainstormin’ concert in 2014.  For the previous three years, Stephen and his friends performed concerts on the North Haven Town Green and donated the money raised to the town’s music department.   After the 2013 concert, Stephen and my family approached me with the idea of doing a concert for the benefit of Yale and as a way of saying “thank you” for my renewed lease on life, and I was in total agreement.  I did some thinking and researching of my own and came across the Nora Brignolo Fund.  This fund was managed by my surgeon and used for research and the development of clinical trials for brain tumor patients and within no time, we decided to organize a concert and give the money to this fund.  However, as this video evidences, the donation to the Nora Brignolo Fund turned into a donation to The Cusano Family Brain Tumor Fund and none of us has ever looked back.  My family and I have continued to earmark all of the profits from this concert to Yale because, very simply, my surgeon saved my life and without his care and the support of the many doctors at Yale, I would not be here.  I am forever grateful for the care I received and our goal is to help others fighting this difficult diagnosis.

How are the donated funds used?

One hundred percent of donations to The Cusano Family Brain Tumor Fund are given directly to the Yale Brain Tumor Center and are under the care of Dr. Piepmeier.  Your donations go toward research, namely better understanding particular types of tumors and their patterns for incidence, but also toward an educational undertaking for patients and their families.  I am pleased to share that I am collaborating with the Yale Brain Tumor Center on a educational effort to be featured directly on Yale’s website.  It is our collective hope that this effort will give patients access to new findings, but also to help the patients and their families to better understand their disease.   As a donor, you will have the ability to visit the site and learn about what your dollars are providing, and I cannot wait to share that with you all.

So, with that background information, the details! 

This year, in addition to the venue change, we are excited to have two new bands join us, one of which Stephen is the drummer in.  The first band, Ja2m, is a duo headlined by Jonathan Moore and Aaron Mannes.  If you were at my wedding, you will remember them singing “I’ll Be” as Ashley walked down the aisle or while they entertained everyone during cocktail hour, and we could not be happier to have them back with us.  Their style of music is fun and will certainly offer something for everyone.  The second act is Wise Old Moon, an Americana band from right here in Hartford, Connecticut.  Proudly, we’re keeping it in the family once again as Stephen is their drummer.  It is perfect music for an end-of-the-summer night overlooking the water.

Hopefully you already have it marked down in your calendar, but if not, save the date for September 16th for what will be the best year yet!  My family and I are so excited to hold this concert again and hope that together, with your support, we’ll help the doctors at Yale save another life.

Turn the Record On, It’s Time For Something

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Yes, I know I haven’t updated you on Playing for the Cure: Brainstormin’, but I needed some time.  Time to relax and recover.  Time to enjoy the fruits of our labor and allow for donations continue to come in supporting this cause.  Time to finalize the details for the Path of Hope, a 5K Journey to Benefit the Connecticut Brain Tumor Alliance and enjoy in its success.  But also time to reflect on life and the fortunes I’ve been blessed with.

Let’s start with the concert.  If you were to ask me to summarize it in one word, I’d say “exhilarating”.

For those of you who attended and/or contributed, thank you!  I am elated to announce that, through our joint efforts with our sponsors and everyone who donated and came out to celebrate the night, we have surpassed last year’s donation for The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.   I am saving announcing the grand total until we have presented the check to Yale, but we are all very excited!  This money will go towards research (such as developing a virus that is injected into the brain to kill the cancer cells without harming the brain), clinical trials, DSC_0627 less invasive methods to treat the tumor, and beyond.

It was a night full of hope and inspiration.  We had terrific bands.  There was a raffle with amazing prizes donated from local businesses, family and friends.  I had the opportunity to meet the mother of a brain cancer patient with whom I connected previously on social media and was inspired by her words and drive to fight.  A fellow brain tumor patient, Aisha Khan, also from North Haven, came to show her support of the cause and is an avid fan of Broca’s Area.  Prior to the concert, my parents’ neighbor let them know he was unable to attend this year, but wished to purchase raffle tickets and instructed them that if he won, to have me donate his prize to a brain tumor patient or survivor.  When my parents arrived at the venue that night and told me this, I got goosebumps and felt proud knowing that we’re making a difference.  Sure enough, about halfway through the raffle, a ticket was pulled and I leaned toward the microphone and announced that the winner of this item was donating his winnings and I selected Aisha as the beneficiary of a $100 gift card donated by the Max Restaurant Group.

It’s the small things like this act of kindness that make the work and effort worth it all.

But it was also a night where I stood in the back of the room and took it all in.  I admired the hard work of my family and friends.  Watching in awe as something terrible has transpired into something so grand.  Along with my surgeon, we stood there and listened toDSC_0631 Goodnight Blue Moon.  With the first note the group sang, their vocal harmonies captured us all and their music was thoroughly enjoyed.  The band brought their merchandise to sell and graciously split their profit with The Cusano Family Brain Tumor Fund.  I purchased both CDs and have been listening to each nonstop.  “Thank you” Goodnight Blue Moon, hopefully you’ll be up for playing at next year’s show!  And a huge thank you to DSC_0633Broca’s Area for your continued support of this cause.  If you have not yet heard them play, I strongly encourage you to take a look at their schedule and catch them in an area near you.

Yet, in the midst of writing this post, the brain tumor community lost yet another truly remarkable, inspirational and brave individual to this awful disease.  Candice and I met via social media a couple of years ago and have connected at various CTBTA events.  She was a huge supporter of this concert and I.  Always with a smile on her face, she triumphantly marched on.  Sadly, last week, Candice lost her battle to brain cancer, but she lives on in my memory as an inspiration and another reason that I continue to fight on and organize this concert.

I am hopeful that next year, this concert will be even bigger and better, and I look forward to seeing new faces that I’ve never met before to connect and be a source of hope and inspiration.  And I would love for you to be the same for me.

Don’t Stop Believin’

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It’s go time!

Our fundraising concert is literally right around the corner and after a year of planning, hard work and preparation, the bands will begin their sound checks and the doors to the venue will open.  It will be, I am confident, another tremendous give back TCFBT flyer sizePlaying for the Cure: Brainstormin’ music festival.

Between now and then, I have one job – to continue to advocate for this event and encourage all of you to join my family and I on this special evening.

When I think about how all of this came to be and the reason that this concert is taking place, I think back to where I was in my life at the time I was diagnosed: I had just moved back home after my first year of law school with the hopes of eventually landing a job in government relations.  I enjoyed the challenges and the grind of working alongside my team the previous summer and educating the legislators on the important issues they were faced with.  However, none of this went as planned due to my situation.  Yet, over the past year, I have begun involving myself in these types of activities and taking a leadership role for issues I care about, namely becoming more involved with the brain tumor community.  I have started The Cusano Family Brain Tumor Fund to provide support to the doctors and researchers at the Yale Brain Tumor Center and am a Director of the CT Brain Tumor Alliance.  Being a part of these two groups offers me the opportunity to do exactly what an advocate of the brain tumor community does – raise awareness.

2014 check presentation to the Yale Brain Tumor Center
2014 check presentation to the Yale Brain Tumor Center

Last year, when we held our concert, none of us knew what to expect as it was our first go at this and we were entering uncharted territories.  But the response was overwhelming and appreciated by everyone who supported and attended the concert.  This year, we set the expectations higher.  Our goal surpasses what we gave last year and we remain optimistic that we will present a larger check than what we wrote last year.

But I am asking for a final time for your support and help to come out and make this night be what I know it can be.  Please, if you’re local to Hamden, Connecticut, mark it down in your calendar – this Saturday, September 19th at 6:30 for Goodnight Blue Moon and Broca’s Area.  If you follow Broca’s Area, you’ve heard a lot about their upcoming music video, and here is a sneak peek  of “That Way”: 

What else can I tell you?  We have tremendous raffle prizes including football tickets, gift baskets, gift cards to restaurants, a gift card for pistol permit classes, a men’s and women’s watch and the grand prize, a 2015 VIP50, 49cc, 4 stroke engine street scooter valued at over $1,000 , just to name a few.  And if you’re unable to attend but wish to support our efforts, any little bit will go a long way.

I hope to see all of my followers there and look forward to meeting new faces for a great cause!

It’s The Final Countdown

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Playing for the Cure, Brainstormin’ is well underway!  We are less than 100 days away, and the excitement is building.  The bands and venue are booked, the date and time are confirmed, letters have been sent out and sponsorships are continuing to roll in.  A huge thanks so far to our corporate sponsors including the Hartford Courant, Carla’s Pasta, Stop & Shop, Gaylord Specialty Healthcare, ShelfSpace Marketing, LLC, Edge Technologies and the UNITAS Club of Hamden – just to name a few.  With all the support, we hope and expect to be able to surpass the $10,100 that we donated last year.  Even though the event is fast approaching, there is still time if you wish to support the cause.  And if you cannot attend, we have set up a site where you can make a donation.  http://www.youcaring.com/yale-brain-tumor-center-381093

The lineup of musical acts features Goodnight Blue Moon and Broca’s Area.  When we approached Goodnight Blue Moon, a successful bluegrass-meets-indie rock band, they eagerly jumped at the opportunity.   The band’s drummer, Nick D’Errico, is a longtime friend of mine and has shown my family and I a great deal of support since 2008.  He was also Stephen’s first drum teacher and an inspiration for him to study music and start Broca’s Area.   I am personally thrilled and honored to welcome Nick and Goodnight Blue Moon on the 19th and I hope that their fans in attendance will be inspired by our efforts with Yale and that this will be the start of a new long-lasting venture with the band.

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Left to right: Mike Carabello, Mary Corso, Stephen Cusano, Ghazi Omair, and Leo Catricala (Broca’s Area)

The second act is Stephen’s band, Broca’s Area.  On June 17th, the Connecticut Music Awards were held at Infinity Music Hall and Bistro in Hartford.  With their infectious soul/hip-hop tracks, Broca’s Area  took home the awards for ‘Best New Band’ and ‘Best R&B/Soul/Funk’.  I know that I speak on behalf of Stephen and the band when I say thank you to everyone who voted for them.  The band members are beyond excited by their wins and have since been asked to headline a show at Infinity Music Hall.   If you attended last year’s show, you’ll know how talented they are and after another year of playing together, they continue to gel.

If Broca’s Area’s Connecticut Music Awards wins weren’t enough to make a big brother beam, I continue to be so proud and impressed by their commitment to the brain tumor community.

So please, SAVE THE DATE!  Come watch two fantastic bands and support this great cause on September 19, 2015 at 6:30p.m. at the Outer Space Ballroom in Hamden, CT.  Together, we can and will find the cure to brain tumors and brain cancer.

Listen To The Music

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Raising awareness and spreading hope – these are the two things that, as a brain tumor survivor, I hope to accomplish these days.  As I wrote about in a previous entry, Broca’s Area, a fusion/hip-hop band had their CD release party this past Thursday.  A packed house came to watch the band debut their album titled Clarity.  The night was full of great music (take a listen to Space, one of their original singles), an amazing live drawing 10647130_812098832172320_2219110831019678840_ncapturing the night’s vibe and a laser show.  It was a wild Thursday night (for me, anyway). Despite all the obvious revelry, the intangibles stood out to me most.

Over the years, it has become abundantly clear to me that my story is not only mine; I have shared every step of this journey with my family.  It was them who watched me spend weeks and months in the neuro-ICU and rehab.  It was them who nursed me back to health.  And it is still them who support me through every moment.  Words cannot express the pride I feel when I see how everyone has taken something so terrible and turned it into something positive.

When my brother Stephen came to me with the idea of donating a portion of CD sales to finding the cure and helping better the lives of those in need, I was honored and knew just where to turn.  One day in 2014, I was home exploring ways to connect with other brain tumor patients and advocates, when I happened upon the CTBTA website.  Within days of filling out a contact form, I was having coffee with the Executive Director and another Board member, sharing my story and ideas.  They welcomed me with open arms.  From that moment on, I have felt a renewed sense of purpose.

For me, the night was such a beautiful melding of my family who has been there from day one, friends and the family I’ve found in the CTBTA.  The pride I felt watching 11091202_812101065505430_9171527113053482358_nmy brother and his bandmates killing it on the stage was almost overwhelming – knowing how much work went it to this, not only for themselves, but for others is a true testament to how much we can accomplish. 11051865_812100148838855_6420674188541795924_nTo everyone who purchased a CD at Black Eyed Sally’s, or who purchased one previously or since then, we thank you!  To my new friends at Carla’s Pasta who have shown tremendous support and generosity, we thank you.  Because of all of you, finding effective treatments and the cure to brain tumors and brain cancer can someday be made possible.

Equally as exciting as watching the show was witnessing the spirit of my fellow survivors and caretakers.  As has been discussed over and over on this blog, a brain tumor diagnosis is devastating for the patient and caretakers.  But with strong spirits and perseverance, any obstacle can be overcome.  I send a big thank you to Susan, David, Tracey, Greg, Maria and Kim for being there with us on this special night.  Your enthusiasm and support are the reason that I volunteered and am now a board member of the CTBTA.  The passion that you have for this cause is unbelievable and inspiring.  Each of our stories is special and unique in their own way, but we are all connected by one common denominator.

For Stephen, music and this band were his clarity during a tough time.  For me, family and realizing what truly matters in life is my clarity and what gives me the drive to carry on and succeed day-to-day.  As I’ve explained before, music has also served as my clarity.  And as you may or may not have noticed, I write these posts based on music and songs.  So in case you missed it, mark your calendars for September 19th and join us for the Second Annual Give Back Music Festival: Brainstormin’ to benefit The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.  Let’s continue to focus on the good – let the music, laughs, and some cold beer bring some clarity to and hope for this devastating illness and those living through it.

Let The Music Do The Talking

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With everything now behind me, I can now look forward to everything else in store for 2015.  And today, I wish to share with you the early details for our second annual Playing for the Cure: Brainstormin’ benefit concert for brain tumor research.

My mission and goal is simple – I want to spread the word on brain tumors to educate with the hope that my story gives hope to those who are awaiting treatment or currently recovering.  I hope that through this blog, our concert, through The Cusano Family Fund to Benefit Brain Tumor Research (a non-profit corporation which I am working to establish for the benefit of the Yale Brain Tumor Center), and through my work with the CTBTA, awareness will be brought to this very important cause and money will be raised to assist doctors and researchers in finding the cure.

So, mark your calendars for Saturday, September 19th!  My family and I are pleased that The Ballroom at the OuterSpace in Hamden, CT will again be hosting the event and hope to surpass what we did last year.  We hope that you will come enjoy the music of Broca’s Area and other great acts with one common goal in mind: raising money to aid in finding the cure.  Details regarding the event time are still being worked out and will be announced as soon as it is known.  Rest assured though that there will be great lineup of acts and of course, food, drinks and raffles.

My brother Stephen formed Broca’s Area with his classmates at the Hartt School of Music and they have some great things happening right now.  On March 26, 2015, there will be a CD release party at Black Eyed Sally’s in Hartford beginning at 9:00PM.  The album contains five original compositions, all of which I’ve had the privilege of hearing and each song is better than the previous.  

With you, together we are making a difference in the lives of those who are living with a brain tumor and the survivors.  But as a family, we wanted to do more.  So for every CD that Broca’s Area sells, a royalty will be paid to the CT Brain Tumor Alliance (the “CTBTA”).  The CTBTA’s mission is “to raise awareness of brain tumors, provide hope and support for others affected by brain tumors and raise money to support and advocate for cutting-edge research for better treatments and a cure.”  Please come to Black Eyed Sally’s to support the cause and help in this fight!

I am very pleased in witnessing how my family has rallied around my battle – for being able to take something so terrible and turning it into something positive.  Some people tell me that I am inspiration, but if not for my family and the care that I received along the way, none of this would be possible.

Playing for the Cure: Brainstormin’

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Playing for the Cure_Brainstormin'-2There’s one week to go until Playing for the Cure: Brainstormin’, a benefit concert for The Yale Brain Tumor Center next Friday, August 15th at The Ballroom at the Outer Space in Hamden, Connecticut.  All proceeds raised will be donated to the Nora Brignolo Fund, c/o Dr. Joseph Piepmeier at the Yale Brain Tumor Center to raise awareness and research for the cure to brain tumors and brain cancer.

The concert is featuring the talents of Broca’s Area and Daphne Lee Martin.  Seeing that I never blogged about it until now, I’ve included a link to one of the articles here.

My family and I completely overwhelmed by the show of support and generosity from the community already.  A huge thank you to media outlets such as the Hartford Courant, CTNOW, The New Haven Register, The North Haven Courier and The North Haven Post; our corporate sponsors The Hartford Courant, Stop and Shop, Edge Technologies, Doug Anderson, ShelfSpace Marketing, LLC, Carla’s Pasta and Severance Foods; and to all who have donated the awesome prizes for our raffle.  Your generosity and support of our effort is extremely appreciated.

For me, the work and time that are expended on putting an event like this together are a no-brainer (no pun intended) and I know my family would agree.  It is simple acts such as receiving a handwritten letter along with a check in the mail from a fellow brain tumor survivor, to receiving an email from a brain cancer warrior right here in Connecticut who had been looking so forward to our event letting me know that due to her medications and rigors of treatment that are currently wearing her down, it’s likely that she’ll be unable to attend but is sending a check regardless that make me realize my purpose in life and give me a sense of pride.

Please help me in this final week  to spread the word and help me in saying “thank you” to the doctors and caregivers who saved my life.  I look forward to seeing you all at The Ballroom at The Outer Space next Friday night!

Hey Brother

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In keeping with the tradition of having a family member write an entry, I turn this over to my brother Stephen.  However, as you can see, I did not ask him to write an entry.  Rather, I have decided to post his toast/speech as the Best Man at my wedding.   Give him another few years and then look for him on the Grammy’s.

“The water is sweet but the blood is thicker.”  At first glance, my brother Stephen may seem like he cares about a few key things: food, sleep and music.  But quickly you learn (and as you will soon see) that he may be the deepest of all our family members, and I love that about him.

A special thanks to Lenny for capturing this moment!  And I can’t thank you enough Stephen and Mary for this tribute.