Monthly Archives: September 2018

A Hero Lies In You!

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“You have a brain tumor.”  These were the words uttered to me that have changed my life ten years ago.  When I first heard them, I knew what it meant, but I never could have prepared myself for what my life has now become.  It is the reason my family and I began this fund and why I took on a bigger role with the CT Brain Tumor Alliance.  This weekend is the midway point – Brainstormin‘ last weekend and the Path of Hope next.

As I sit here and write this, thinking back on the night last Friday, the best way I can personally describe the night was joyous.  In my humble opinion, I think the author of this email described it perfectly: “Last night was supremely fabulous!  I found myself feeling overwhelmed with such palpable love that I am sure you felt as well.  I certainly hope so because there really aren’t adequate words to describe it.  The people around me repeatedly shared the same sentiment, so I don’t think it was just me and you.”

Photos by Abigail Scott Photography 

As I stood at the front of the room, looking out to a room full of family, friends, doctors and nurses and fellow brain tumor warriors was extremely overwhelming.  Yet, because of you, this is possible!  To our presenting sponsors, Carla’s Pasta and Specialty Packaging – words are inadequate to truly let you know how I feel.  Each year, you go above and beyond what you commit to and your help in growing this fundraiser is beyond appreciated.   You made the night possible and instilled hope for continued findings.   The Carla’s Pasta food truck – great addition this year and amazing!  Thank you Heat for providing great entertainment all night long!  Thank you Renee DiNino for your eagerness to serve as emcee, you were great as always!  And to Ann Nyberg, it is always great to see you; your time and desire to be a part of this night is so greatly appreciated!  To the rest of our sponsors: ShelfSpace Marketing, Strategic Information Group, Beirne Wealth Consulting, Connecticut Public Broadcasting, Edge Technology Services, People’s United Bank, Stop & Shop, BMO Harris Bank, Sullivan & LeShane, Unitas Club, Blum Shapiro, Guida’s Milk & Ice Cream, Karmory, Webster Bank, Russo, Russo & Slania, Updike, Kelly & Spellacy, Thrive Therapy Services, Al Mac Motors, iHeart Media and WTNH – THANK YOU ALL!  To our vendors, Shoreline Cafe & Catering, Beach Donuts and Libby’s Italian Pasty Shop, thank you all.  And last but not least, to our host, Stony Creek Brewery, thank you for making the night  special and building this partnership with us.  I look forward to continuing to build upon what we have started and moving forward with our beer, which everyone loved!

So while donations continue to be made and Stony Creek Brewery has one last Charity Wednesday on September 26th, we won’t know the exact dollar figure raised for Yale quite yet, but I can assure you that you should feel proud.

The pinnacle moment of the night was when I got to share that the team at Yale is moving forward with its research project on central neurocytoma.  In a previous blog, I told you that the doctors and researchers have collected a cohort of samples and are ready for the second phase of the study, to further understand the molecular processes driving the formation of these tumors.  With the support you have provided, Yale is completing an application for funding from the National Institutes of Health on central neurocytoma in early October.  We are that much closer and it is a joint effort, one for which I am forever grateful.

So to everyone who donated and joined us, thank you again, you’re all heroes!  I look forward to sharing the grand total and additional updates with you soon.

Now, I’ll get back to final preparations for the CTBTA’s 5K next Saturday’s.  For information, visit https://www.ctbta.org/events/path-hope/event-info/.

We’re All In This Together

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Ahhh, September is finally here!  And that means Brainstormin‘ is literally just around the corner.  My family, friends and I are hard at work, getting last minute details squared away and ensuring that Friday night will be one to remember.  To those who have their tickets, I look forward to seeing you there.  For everyone else, you can purchase them at the door!

I’ve been posting a lot on social media and sending emails blasts with the various updates, but here’s everything you need to know:

Friday, September 14th at 6:30 at Stony Creek Brewery.  We have sponsors; we have iHeart Radio’s Renee DiNino as emcee and Ann Nyberg of WTNH as our special honorary guest; we have the cover band Heat; the Carla’s Pasta truck will be on site; we will have a commemorative toast with beer brewed by Stephen and I; raffle and auction items that you won’t want to miss; but most importantly, updates on the central neurocytoma study that your funds have supported by surgeons at the Yale Brain Tumor Center.

In the five years that we have done this, there has been one constant and that is the support of our family, friends, coworkers, survivors, warriors and caregivers alike, as well as new faces from around the community.  Without your never-ending generosity, this would not be possible.

Because of you, I have hope.  Because of you, brain tumor patients and their families have hope.  Because of you, better treatments are being found and we are inching closer to the cure.

As a ten-year survivor, there is nothing more that I could have asked for when I was diagnosed.  At the outset, I was afraid, albeit confident.  I fought hard to regain all that I lost.  When I finally returned to my old self and came through this adversity, I knew I wanted to make things better for the doctors and patients fighting this disease.  Because of you, I found it within myself to want to champion this cause and give back.

On Friday night, come out and be prepared to have fun.  Open your hearts and your wallets and help to find the cure.  Yankees and Red Sox fans, there’s something for you; if you’re a fan of the Giants, come on out; Elton John fans! food lovers!  You get the hint – we have awesome prizes.  And someone will ride home on this, thanks to my brother-in-law and owner of Al Mac Motors who has donated a scooter every year this fundraiser has been held.

A brain tumor diagnosis is not something that anyone wants to hear.  It is not a ‘sexy’ disease and is underfunded in terms of research dollars.  But you will be helping to change that that, and I am eternally grateful.  The seeds were planted five years ago: