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PLAYING FOR THE CURE: BRAINSTORMIN' 

Raising funds through a benefit concert to support clinical and laboratory research for doctors and researchers at the
Yale Brain Tumor Center
 
so they can find the cure for brain tumors!

SEPTEMBER 15, 2017
6:30 - 11:00 p.m.

STONY CREEK BREWERY - BRANFORD, CT

GNERAL ADMISSION TICKETS ARE $35/FREE FOR BRAIN TUMOR WARRIORS
Contact Chris at chrisgreymatters@gmail.com for more information

 @ craft beer × americana/roots rock music × fighting for a CAUSE

Photos from Playing for the Cure: Brainstormin' 2017

Abigail Scott Photography

2016

About

The Cusano Family Brain Tumor Fund 

In 2o14, after two years of performing give back music concerts on the North Haven Town Green to benefit the school district's music department, the Musicians of North Haven organized the first annual Playing for the Cure: Brainstormin', a give back music concert for the benefit of the Yale Brain Tumor Center.  Stephen Cusano, who founded the Musicians of North Haven and his family decided it was time to give back in a more personal way and chose to donate to the Yale Brain Tumor Center, where his brother Chris was a patient, as a way to say "thank you" for Chris' renewed lease of life and the fact that he had survived.  

The Cusano family intended on donating all the proceeds to the Nora Brignolo Fund, managed by Dr. Piepmeier and used for research and the development of clinical trials for brain tumor patients.  Surprisingly to everyone, as Dr. Piepmeier announced in his remarks during the concert in 2014, captured in this video, the donation to the Nora Brignolo Fund turned into a donation to The Cusano Family Brain Tumor Fund and the Cusano family has never looked back. All of the profits raised from the concert have continued to be earmarked for Yale for one simple reason - but for the care and dedication from Dr. Piepmeier and the staff at the Yale Brain Tumor Center, Chris would not be here, able to share his story and help others facing this diagnosis.  Since creation of this fund, over $100,000 has been donated to the Yale Brain Tumor Center through the Cusano Family Brain Tumor Fund.  In 2014, the Musicians of North Haven donated $10,100 to the Yale Brain Tumor Center, followed by $13,500 in 2015.  In January 2016, Chris was notified by the staff at Yale that an anonymous donation was received from The Denver Foundation in the amount of $53,000 for The Cusano Family Brain Tumor Fund.  To this day, the entire Cusano family is grateful for the generosity of this donor and feels inspired by knowing that their efforts are making a difference for those affected by this disease.  In September 2016, the concert was relocated to the Stony Creek Brewery and the event exceeded all expectations as $37, 250.00 was donated to the fund.  This amount was made possible with thanks to the many corporate sponsors, donors of auction items and raffle items and a generous donation during the month of September for Charity Wednesdays at Stony Creek Brewery.  

Why the Ladybug?  

Our logo was inspired by a symbol that has been a part of the Cusano family since Chris was diagnosed.  After his first two surgeries in 2008, Chris went back to Yale for his neuropsychological testing and his father prayed while in the backyard, asking for a sign that Chris would be okay.  At that moment, a ladybug flew over and landed on his shoulders, sitting there for hours.  In 2014, when Chris had his followup MRI, a ladybug landed on his father's office wall, giving him comfort in knowing that Chris' scan would be clear after the gamma knife surgery the past December.  Then, most recently, when the family's loyal dog, Chip, passed away last August, Chris sat outside, reflecting and looked up at the sky, said a prayer for his best friend and by the time he looked back down, a ladybug was sitting there, staring at him.  To us, the ladybug is more than just luck - she symbolizes hope, fight and perseverance, and it is with that sentiment that the logo for the Cusano Family Brain Tumor Fund was designed.   

How are the donated funds used?

Through the generosity of The Cusano Family Brain Tumor fund, the Yale Brain Tumor Center is pleased to be the beneficiary of Playing for the Cure: Brainstormin' being planned by the Musicians of North Haven on September 16, 2016 at the Stony Creek Brewery in Branford, CT. Funds raised during this event will support clinical and laboratory research to find the cure for brain tumors.  Your support through goods, services or financial donations is tax-deductible subject to the limits allowed by the IRS.  Fundraising for Yale Cancer Center is managed by Yale University, a tax-exempt organization, section 501(c)(3).  

Cusano family presents a check in the amount of $37,250.00 as proceeds raised from Playing for the Cure: Brainstormin' in 2016

Cusano family presents a check in the amount of $37,250.00 as proceeds raised from Playing for the Cure: Brainstormin' in 2016

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The Concert

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We are excited to be returning to the Creek on Friday, September 15, 2017.  The concert will once again take place in the Celebration Room, overlooking the water - it is the perfect venue for an end-of-the-summer night, all for a great cause.  We are excited to announce that Wise Old Moon will be back, headlining the show this year.  

Included in your $35 admission ticket is a voucher for a drink at the bar (beer or wine).  We're excited to announce that Shoreline Cafe & Catering will be donating grinders and sandwiches, in addition to having the on-site food trucks.  You are also free to bring in your own food as well!  

Finally, we will be a premier raffle and auction full of can't miss items, so come ready to win and maybe you'll be lucky enough to win the grand prize, a 50cc street scooter donated by Al Mac Motors II. 

 

Wise Old Moon

Hartford based Wise Old Moon performs "Don't Take Off"

2017 Event Sponsors

Annual Sponsor:

lead Sponsor:

presenting sponsors:


Platinum Sponsors:
 

GOLD SPONSORS:

SILVER SPONSORS:

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Annual Donors:


Media Sponsors:

Media

WTNH teams up with Cusano Family Brain Tumor Fund

(WTNH)- News 8 has teamed up with the Cusano Family Brain Tumor Fund as the media partner for the 4 th annual "Playing for the Cure: Brainstormin'" fundraising event, being held on Friday, September 15 th, 2017 at 6:30 pm at Stony Creek Brewery in Branford.

Courant: Cusano Family Brain Tumor Fund to Hold Major Fundraiser on September 15th in Branford
http://www.courant.com/community/west-hartford/hc-ugc-article-cusano-family-brain-tumor-fund-to-hold-major-2017-08-22-story.html

Playing for the Cure: Brainstormin' Raises $37,250 for the Yale Brain Tumor Center
http://www.courant.com/community/hc-ugc-article-playing-for-the-cure-brainstormin-raises-3-1-2016-11-30-story.html

Better Connecticut with Kara Sundlun and Scott Haney.  May 4, 2016

Cusano family to host concert benefiting Yale brain Tumor Center, Post-Chronicle - July 16, 2014 http://www.ctpostchronicle.com/articles/2014/07/16/entertainment/doc53c6faeab6ff4588555475.txt

Hamden music festival to benefit brain tumor research at Yale, New Haven Register - July 17, 2014
http://www.nhregister.com/general-news/20140717/hamden-music-festival-to-benefit-brain-tumor-research-at-yale

Drummer Organizes Playing For The Cure As Celebration Of Brother's Recovery, Hartford Court - August 1, 2014 http://articles.courant.com/2014-08-01/entertainment/hc-ctn-playing-for-the-cure-in-hamden-0815-20140801_1_bar-exam-law-school-doctor

Concert raises $10,000 for Yale Brain Tumor Center, New Haven Register - Nov. 21, 2014 http://www.nhregister.com/article/NH/20141121/NEWS/141129908

Yale Brain Tumor Center Receives $13,500 Donation from Cusano Family Fund, New Haven Register - Dec. 12, 2015 http://www.nhregister.com/article/NH/20151212/NEWS/151219837

 

Chris' Story

“Adversity.  We cannot direct the wind, but we can adjust the sails.” Anonymous

In my office hangs a picture with this quote, and I read it everyday to not only remind myself of all that I have overcome, but also to remind me that no matter the struggles of yesterday or of the past, I will continue to persevere.

As a 23-year old, I was enjoying life and preparing to embark on my career to achieve my dreams of earning my juris doctor degree.  Yet, life had a curveball that was more than I could have ever bargained for headed for me.

Over Memorial Day weekend in 2007, I suffered the worst headache of my life and had a difficult time participating in my family's cookout that year.  The pain was so severe and it seemed that there was nothing I could do to help.  Fortunately, by nighttime, the pain had subsided and things returned to normal, or so they seemed.  However, another troubling symptom arose a few days later – I was seeing two of everything.  

I made an appointment with my optometrist to evaluate the issue and I underwent a series of tests.  The conclusion, or diagnosis at this point, was that I had diplopia, commonly known as double vision and was prescribed prism glasses to wear.  I was assured that the double vision was not a major cause for concern, but blood work was ordered to rule out Lyme disease.  By what I now refer to as my first "unlucky break," the test came back negative for Lyme disease and within a few weeks of wearing the glasses, the double vision had resolved.  The glasses were never needed during my first year of law school – at least until I returned home the following May.    

In law school, the saying is “Year one, they scare you to death; year two, they work you to death; and by year three, they bore you to death.”  It was true.  I earned by B.A., cum laude, from the University of Connecticut with a degree in political science.  I took a year off in between UConn and law school, working for a law firm in Hartford, CT as a lobbyist.

I enrolled in Roger Williams University School of Law in 2007 and made a great group of friends, in addition to meeting the girl I would marry six years later.  Along with her, our group of friends supported each other during the rigors of law school.  However, when I returned home to Connecticut after that first year, the double vision returned.  When I used the prism glasses that were prescribed a year earlier, they did not work - I was still seeing two.  

After multiple visits back to my eye doctor and upon my request, I was referred for a second opinion to a neuro-ophthalmologist on June 27, 2008.  He immediately told me he suspected something was wrong and ordered me to go directly to Yale-New Haven Hospital for a MRI. 

When the phone rang on July 1, 2008, I, along with my parents, were advised to come into the neuro-ophthalmologist’s office to discuss the results.   I learned that my MRI showed a large tumor sitting directly in the middle of my brain – most likely a central neurocytoma and based upon the size as it appeared on the MRI, it had likely been growing from anywhere for three to six years. I was immediately sent to Yale-New Haven Hospital, where I was unnervingly greeted by a priest, a nun and then Dr. Joseph Piepmeier and his staff. 

My doctors and the medical staff were amazed that I did not present with more symptoms and that I was even functioning at the moment.  Emergency surgery was scheduled for the next day.  On July 2, 2008, I underwent a craniotomy to remove the tumor.  The operation lasted approximately nine hours as the tumor had pushed my brain to both sides of my head and was suffocating the veins.  Though the tumor was successfully removed, the tumor caused hydrocephalus and swelling around the brain.  Post-operatively, I did well between days one through three, but on day four, I suffered a setback as a subdural hematoma formed, requiring emergency surgery.  To complicate matters, I developed Pseudomonas aeruginosa (a type of bacteria) and was required to remain in the neuro-ICU for an additional week-and-a-half.  I was finally released home under strict orders that I be given a heavy dose of intravenous antibiotics and steroids that had to be followed and if they were not agreed to, I would have had to remain in the hospital for at least two more weeks.   

My life had gone from law student in May to a shell of my former self within a matter of a month-and-a-half.  My comprehension skills were gone - I lost the ability to talk in full sentences, I could not write on my own and I had great physical deficits on the right side of my body.  I was sent to Gaylord Rehabilitation Center where I attempted to relearn to read, write, talk and build back the physical strength I lost.  A neuropsychological exam was ordered and the results showed that I had severe cognitive disabilities and these were likely permanent in nature.  My quest to earn my juris degree was likely over.

After consultation with my neurosurgeon, a joint decision was made with my medical staff, and a third surgery was scheduled to implant a VP shunt in an attempt to relieve the hydrocephalus and reduce the swelling.  In talking with my doctor, my family and I learned that after insertion of a shunt, approximately 80% of the patients will see improvement in their cognitive function within 6 months and 2 years.  About 15%-20% of those patients will regain total cognitive function within 6 months and a very small percentage, 1%-2%, will experience an immediate recovery overnight.  

On September 8, 2008, I underwent a third operation for the insertion of the VP shunt.  The results were near miraculous.  I woke up the following morning, fully able to communicate, read, write and the right sided deficiencies on my body were vastly improved.  I was the 1%.  By the following January, I returned to law school and ended up walking with my classmates at the Commencement ceremony and completed my academic work at Quinnipiac University School of Law.  

While the prognosis for a neurocytoma is generally good, mine was described as “atypical”.  Since 2008, I have undergone: (1) a shunt revision in 2012; (2) a gamma knife surgery in December 2013 to destroy a small portion of the tumor that was unable to be removed during the first surgery and was being monitored for growth; and most recently (3) a craniotomy in January 2015 to fully remove the regrowth of the tumor as the gamma knife surgery did not destroy the remaining tumor as expected.  Additionally, I have suffered multiple seizures since 2009, all of which altered my life in various ways (for example, being dependent on others for rides as I was not allowed to drive for a period of time after each seizure).  Since changing my medication to Keppra, I have been seizure free for two years.   

Without a doubt, my adversity over the years has led me to my passion, and that is being an advocate.  I joined the Connecticut Brain Tumor Alliance as a volunteer in 2013 and now the President of the Board.  This meaningful work is very rewarding and enriching, and I feel honored to lead such a wonderful, dedicated organization.

In collaboration with Dr. Piepmeier, my family and I established The Cusano Family Brain Tumor Fund, a gift fund designed to give back and promote brain tumor research and awareness.  Donations are raised from an annual concert and are directed towards clinical and laboratory research in order to find the cure.  

Read more about Chris and his journey at greymattersblog.com.