Tag Archives: concert

I Didn’t Understand It Way Back When; But Sitting Here Right Now, It All Makes Perfect Sense

This past Thursday, we made a visit to the Yale Brain Tumor Center to present the net proceeds of our fundraiser.  The majority of hospital visits are not fun, but this day is always filled with smiles because of the hope that it inspires.  The collaboration between Yale and my family is truly special and something that I know each of us takes to heart.  I cannot thank my family and friends who helped to make this year such a huge success and cannot wait to top it in 2018 as we celebrate my 10th anniversary!

Thank you, Wise Old Moon, for headlining this event and for your enthusiasm to be a part of this event the past two years.  I wish to again thank our corporate sponsors – ShelfSpace Marketing, LLC; Carla’s Pasta; Specialty Packaging; Al Mac Motors; Beirne Wealth Consulting; Sullivan & LeShane, Public Relations; iHeart Radio; WTNH; Stop & Shop; Bank of Montreal; People’s Bank; Connecticut Public Broadcasting Network/CPTV; Edge Technology; Unitas Club; Updike, Kelly & Spellacy, P.C.; Henry, Raymond & Thompson; Guida’s Dairy; Blum Shapiro; Sardilli Produce; Webster Bank; and Russo, Russo & Slania, P.C.  Thank you Shoreline Cafe & Catering and Beach Donuts for donating the sandwiches, donuts and coffee!  To every individual and company that donated items to our raffle and silent auction, your support is appreciated.   And last but not least, thank you Stony Creek Brewery for being an awesome partner in this venture.  The support and awareness that you are bringing to brain tumors is amazing and appreciated by everyone affected by this diagnosis.

Through everyone’s efforts, a grand total of $42,800 was donated to the Yale Brain Tumor Center this year!  As a survivor of this diagnosis, with my family and friends who wanted to help my doctor and his team in some way, I am in awe that between our four concerts and the donation from the Denver Foundation, we have donated $156,650.00 in four years!   The money we have donated thus far has been used as seed funding to help doctors and residents take their research efforts from concepts into reality.

To date, there has been a dedicated undertaking to understand more about the triggers of particular brain tumors and their drivers.  Research is also ongoing to develop nanotechnology to safely administer viruses to particular tumors to destroy the cancer cells, but without harming the brain.

Additionally, within the next six months, Yale will be publishing a study of great interest to my family and I.  A couple of years ago, I was contacted by a resident at Yale who was studying the genetic drivers of central neurocytoma.  I donated a blood sample and a piece of my tumor was obtained by the lab to understand the cause of this mutation.  The Chair of Neurosurgery at Yale is overseeing this study and shared this status update with me.  I plan to meet with him and the resident working on this study to learn more about their findings before the paper is published and I will share these updates at a later date, as well as the resident’s thesis.  What was told to us, and which comes as no surprise to any of us, is that this tumor type is vastly different from any other tumor and does not share many commonalities.

Life is unpredictable.  This is not even something you can conjure up in a dream, but if you had, and told me it would happen to me, I would have said “no way”.  Yet, it did happen and I survived and because of it, I am a better person.  I have a new outlook on life and a new normal.

That double vision nine years ago – it all makes perfect sense now.

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…

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!

GalleryImages2

 

Thank You, Friends

Every cloud has a silver lining.

If you would have asked me in 2008 whether I would find any positives in my diagnosis, I more than likely would have said “no chance.”

Amazingly though, as I sit here seven years later, I can say with absolute certainty, the answer to that question is a profound “yes!” At the time I was diagnosed in 2008, I was 24 years old and left wondering whether I would even make it through the surgery, never mind what my future would have in store.  Through the multiple ups and downs that I have faced since that day, I am standing prouder and taller than ever.  I have found my calling.

What I failed to realize in 2008 is how my diagnosis would change my life, and the lives of those around me, namely my family.  Yesterday, along with my wife and family, we went to Yale-New Haven Hospital and presented a check in the amount of $13,500.00.

Dr. Joseph Piepmeier with my brother Stephen and I.
Dr. Joseph Piepmeier with my brother Stephen and I.

Without each and every person who supported this event, attended the concert, donated to the fund or donated merchandise for our raffle, yesterday’s presentation of the check would not have been possible.  Because of you, we are providing hope to patients and their families dealing with this diagnosis.  With these monies, Dr. Piepmeier and researchers at Yale spoke of hope and possibility to better treat brain tumors.  He discussed his hope to develop a virus to destroy the tumor cells that can be injected directly into the tumor but while not harming the brain.  To think that this money can deliver those results brings a smile to my face, and should certainly bring one to yours also.

First and foremost, I thank Ashley and my family for supporting me in this quest and continuing to be there by my side  every step of the way.  Without you, none of this would be possible.

Next, a giant thank you to our sponsors.  Without your support, this would have never been possible.  I am humbled by your generosity and compassion.  I want to make a special mention to the “Rock Stars”, our corporate sponsors Carla’s Pasta and ShelfSpace Marketing, LLC.  THANK YOU!

I would be remiss to not mention each company who donated a raffle item – J. Christian’s, Omar Coffee Co., Arnold’s Jewelers, Libero Jewelers, The Max Restaurant Group, The University of Connecticut, Ted’s Auto, Precision Concepts and The Walter Camp Football Foundation.  The raffle raised about $2,500 of the $13,500.  Thank you for your support, dedication to this event and desire to assist in this quest.  Your generosity alone merits the grandest of recognition and I hope that you can feel the pride of knowing that you contributed in such a great way.

To the bands, Broca’s Area and Goodnight Blue Moon – absolutely amazing.   You entertained the crowd all night long and gave all of us, brain tumor patients included, a reason to smile and forget about life for a while.  As I mentioned in an earlier blog post, you made the night the success that it was.

I am thrilled to tell you that next year, we’re taking the concert to the Stoney Creek Brewery in Branford.  We tested the waters and now know that this event could be the success that we originally envisioned.

So what more can I say, other than: “Thank you, friends.  Wouldn’t be here if it wasn’t for you.”

Turn the Record On, It’s Time For Something

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.

With A Little Help From My Friends

This entry was written by my father, Tony Cusano:

I remember the day we got the news like yesterday – the cause of the mysterious double vision would finally be known.  The phone rang and it was the call we had waited three long days for:

“Hi, Dr. Spector would like you to come in this afternoon – your results are in.”

As we were driving to his office, I did not have a good feeling.  The unknown was killing me and we needed an answer.   We walked right into his office and Dr. Spector did not pull any punches.

I heard the words that he was saying to Chris and I was hoping that it was a dream:  “Your MRI shows a massive tumor in the center of your brain.  Your brain has been pushed aside and your optic nerve is being crushed, thus the reason for your double vision.  You also have hydrocephalus, and quite honestly, I do not know how you are functioning.  I have already contacted the chief of neurosurgery at Yale and he and his doctors will be waiting for you when you arrive.”

I could not speak, there was no saliva in my mouth.  I felt my heart was racing and my legs suddenly felt very unstable.  I hugged Chris and we both cried but immediately, we went on the offensive.  After enduring the mysterious double vision and headaches, we now knew what we were fighting and I honestly believed that he was going to be alright.  The battle was excruciating, full of ups and downs with many more unknowns, and it will continue throughout Chris’ life.

I tell you this piece of the story again because my family and I have now chosen to continue to fight the war on brain tumors and brain cancer.  It is the reason that we now do these fundraisers.  If I can alleviate the pain that some other parent and child may have to go through by the efforts of these fundraisers, then all of this work is well worth it.

I have a new found respect for fundraisers and directors of corporate relations because fundraising is not an easy task.  No matter how noble the cause is asking for donations, raffle gifts, favors or attending an event, it is never easy.   We are all so busy with our own schedules and we all have our causes that we want to support.

But our cause is true in spirit.  We know the pain of this disease, and what it can do to the individual and the family.  One hundred percent of the money raised is donated to the Yale Brain Tumor Center where the money is used to promote better brain tumor treatment options and support clinical and laboratory research to find a cure for brain tumors.  It is nice to know where the money is going and what the doctors are doing with it in their efforts to learn about the tumors and stop the disease from affecting families like ours.

We are so close to our goal for this years event.  I thank all of our family, friends and business organizations who have donated this year and in the past, but additional support would go a long way in assisting now and in the future.   If you can make a donation, if you can donate a raffle gift, but most importantly if you can attend the concert on September 19th, we would greatly appreciate it.TCFBT flyer size