Tag Archives: seed funding

Blinded Me With Science

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We are a little over two weeks away from Brainstormin’ but yet, there is so much work to be done.  And no, I am not talking about the fundraiser itself – at the end of the day on September 14th, everything will have fallen into place and I trust gone off without a hitch.  So the work that has to be done?   I am referring to the efforts of raising additional funds to help the doctors and researchers continue their efforts to better treat brain tumors and ultimately, discover the cure.

This weekend’s news of the passing of Senator John McCain serves as yet another reminder and impetus for the work to carry on and the fight to find the cure.  Another life taken from this dreaded disease, but a life that will not be forgotten.

Through my work with the Connecticut Brain Tumor Alliance and my support of the Yale Brain Tumor Center via the Cusano Family Brain Tumor Fund, I have hopes that further breakthroughs will be discovered and lives will be improved to better treat this diagnosis.

Despite my optimism, we’re still facing obstacles in treating brain tumors, one being the blood-brain barrier.

For those readers who attended Playing for the Cure in 2015, you may recall that the doctors at Yale were working on developing a virus that would be injected into the tumor in an attempt to destroy it directly, without causing harm to any other healthy areas of the body as a result of chemotherapy.  Unlike other types of cancers where treatments can be administered with success, the blood-brain barrier prevents drugs from reaching the brain and affecting the tumor.  However, researchers face the obstacle of raising the funding to take this to a “clinical grade” version for testing in human subjects.

Further, as I mentioned in a recent post, additional findings regarding benign tumors have been identified, namely clues about the molecular processes that drive and cause these tumors to form.  Again, securing the funding for these projects and studies remains a difficult process, but you can help.

As I approach ten years since my miracle, this story is no longer about me and my struggles; rather, the focus has shifted to providing support to the doctors and researchers so that no other patient or family needs to go through this.  Brain tumors do not discriminate based on sex, political affiliation, age, etc.  They are ruthless and destructive, so to this end, I am asking for your support.

If you have not yet done so, please consider joining these efforts to support brain tumor research.  Your first opportunity is on September 14th at the 5th annual Playing for the Cure: Brainstomrin’.  Join my family and I as we raise funds for this groundbreaking  research.  You’ll get to hear, first hand, from brain tumor surgeons and researchers, as they discuss their findings of the studies your past support has funded.  Please, purchase a ticket or contact me to make a contribution if you cannot attend.  There is never a wrong time to participate, nor a donation too small.

Tickets are going fast, so join us for a night out and a celebration of hope.  Your support means the world to us and I know that the doctors and researchers surely appreciate it, too.

And as a bonus, if you’re in attendance, you’ll be in store for a special treat that is brewing…

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

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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.

Thank You, Friends

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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.”

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.

Planting The “Seeds” To A Cure

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To me, hospitals have become synonymous with illness.  For some visitors, hospitals bring out hope, faith and inspiration.  In the past six years, I have not encountered many of these occasions.  Today however, it was a whole different feeling.   Along with my family members who helped to organize and put together a successful give back concert,  we returned with a check in hand.

It’s nerve-wracking seeing my surgeon, no matter when I see him.  But today, he and his staff were all smiles.  Rather than my family and I thanking them for giving me the chance to live and continue my journey, they thanked us.  What stood out to me was hearing him say that at the time he treated me in 2008, he saw my family’s commitment to me and the desire for me to get better, but that what he’s learned over the years is my family’s commitment to this cause.

I’ve said it all along – my battle and struggles fighting my brain tumor have shaped me.  The person that I am today is due in great part because of what I went through and how I almost lost it all.  But finding preventative treatments and the cure for brain tumors is my new passion.  And knowing how my neurosurgeon plans to use this money now and going forward brings a smile to my face.

Today, we donated $10,100 to The Cusano Family Fund, a newly established fund which my surgeon intends to use going forward.  Specifically, the money that we donated will be used to allow my neurosurgeon and the doctors  to use the money as seed funding.  “Seed funding” you ask?  As the best that I can describe it, seed funding helps propel projects to important milestones that will bring the research to levels that allow scientists at the Yale Brain Tumor Center to take their work to clinical trials.  In particular, Yale will be using this money to help develop nanotechnology that will deliver chemotherapy and other medicine to typically unreachable spots in the brain.  It is very special to know that money in my family’s name can have such a major impact!

But what is even better – the fact that the doctors at Yale are excited about the prospect of making this event even bigger and better in the years to come.  We already have a tentative date for 2015 and have expectations to make this concert a yearly event.  Hopefully, I’ll see all of you readers there.

And next year, hopefully we’ll present an even bigger check…DSC02447