Tag Archives: brain

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!

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There Is A Light That Never Goes Out

The brain tumor community lost another warrior last week, Martin Syndomin.  I will always remember my first CTBTA walk meeting last year.  Along with Directors, volunteers, Ashley and I, there was Martin – I felt an immediate connection with him.  He was a young brain tumor survivor who worked in finance in New York City, but his passion was volunteering for the Connecticut Brain Tumor Alliance.  With the first ever Path of Hope last year, he was instrumental in assisting with the financials, registration site and site visits, among others.  But what stood out to me was his passion for just being there and lending an ear to myself and other new volunteers.  I remember him giving my wife and I the biggest hug after that first meeting – the most genuine and sincere “It’s so nice to meet you” I’ve ever experienced.  Martin, you will be sorely missed but your fight will carry on.  I can promise you that I will continue my pledge to help find the cure and develop new treatments in the fight against this terrible disease.

When we suffer the loss of someone, we often express our grief by saying our “hearts are heavy”.   It’s certainly an accurate description, however after Martin’s loss, I felt a little differently.  My heart is heavy, but it’s full.  Full of realization and fight.  Full of renewed energy to live a life others so valiantly lost.

There is a lot of current promise out there to make me feel like this is not some lofty, far-fetched hope.  I look at the work of the CTBTA; I look at the National Brain Tumor Society and the American Brain Tumor Association; I look at the work and promising research being conducted at the hospitals around Connecticut.  Great things are happening and it should leave brain tumor and brain cancer patients feeling hopeful.  Together, this all makes me believe that finding the cure is certainly within reach in the not too distant future.

And while as a community we are working to reach this goal, there is something we can all do a little better.  Appreciate.  Enjoy.  Smile.  Laugh.  Of course it’s not all perfect.  So when life hurts, cry.  Cry the ugly cry if you have to.  Don’t hold back on anything.

There’s no judge or jury needed.  I’m often guilty of zeroing in on nonsense, guilty of not truly living.

So, for me, for Martin, for everyone, I ask one thing.

Experience.