Tag Archives: CTBTA

Oh, and it’s Time to Lend a Hand to Life, the Greatest Gift of All

There are not many instances where you would say a hospital visit is pleasant or joyous, but our annual check presentation from the Cusano Family Brain Tumor Fund to the Yale Brain Tumor Center stands as one of the few exceptions.

Along with Ashley and my parents, we went back to the place that is all too familiar for all of us.   Walking through those doors, I’d be lying if I said a myriad of thoughts wasn’t running through my head.  Ten years ago, I thought I was never going to go home from the hospital.  Monday was different though.  I could not run into the building fast enough as I was beaming with excitement and pride over what my family, friends, community partners and new acquaintances have done, and will continue to champion.

Thanks to all of you for your support this year, we presented a check for $40,904.00!As a third party fundraiser for the Yale School of Medicine, I am proud, and speaking for my family, I know they are too.  Because of you, our friends and supporters, there is hope for brain tumor research and for patients.  Because of your participation and support, the doctors and researchers were enabled to take their research on central neurocytoma far enough to apply for federal funding from the National Institutes of Health (more on this coming soon).  The community has rallied and shown that a brain tumor messed with the wrong person (and family), and I am forever grateful for each and every one of you.

Together, since 2014, this gift fund has raised over $198,000 for The Cusano Family Brain Tumor Fund that is being used toward brain tumor research at Yale.  We have also forged relationships and friendships that will last a lifetime – countless partners, supporters and fellow brain tumor warriors that I have met along this journey.  Additionally, because of this event, I have friendship with Ed Jr. and the crew at Stony Creek Brewery and hope to have a collaborative effort on a charity beer that was sampled and brewed by Stephen and I.  We have also brought awareness to brain tumors and as my dear friend Tracey would say, we are making this journey a little less scary for the next person who is diagnosed.  But above all, we have developed a friendship with the doctors, nurses, researchers and development officers at Yale.  Each time I see them, I always begin by reminding them of my gratitude for saving my life and enabling me to sit here and write this entry.  I am hopeful and confident that together, we can and will make this diagnosis a little less scary.

With all of the good synergy and willingness to collaborate among the doctors, researchers and nonprofits such as the Connecticut Brain Tumor Alliance, better treatments will continue to develop until ultimately, the cure will be discovered.

I am speaking only from what I can see and what I believe, but I trust we are on the precipice of a breakthrough.  Sooner rather than later, the brain tumor community will have its “ah-ha!” moment.  Until then, our work must go on and we will continue to say thank you in the only way we know how.

Cheers!

Did You Ever Know That You’re My Hero

The brain tumor community lost one its greatest advocates and the fiercest warrior I have ever met, and perhaps will ever know, this past Friday.

Tracey Gamer-Fanning-Shimer, a co-founding member of the Connecticut Brain Tumor Alliance and its first Board president, passed away after her courageous battle with brain cancer.

Diagnosed in 2006 and given three-to-five years to live, she inspired many and touched countless lives, including mine.  I first reached out to the CTBTA in 2013, five years after being diagnosed and in need of an outlet for support and comfort.  The organization welcomed and embraced me with open arms, but Tracey and I had a special bond that I will cherish forever.

I know I am not alone in this, but she taught me the meaning of perseverance, love and how to truly enjoy life.  She was the most selfless and inspirational person I have ever met.  Never once did she complain or feel sorry for herself.  Always smiling and having a good time, she would come out and say something that made you do a double-take, but this was the Tracey that we knew and loved.

Yet, aside from how great of an individual she was, she also changed lives and made a profound impact on the brain tumor community, especially here in Connecticut.   The one thing about Tracey – she always, always put her friends and the brain tumor patients before her.  She allowed us to have a voice and spill our emotions.  Even when I knew she was not feeling her best, she would attend a Gray Ribbon Club meeting so that she can provide comfort and hope to someone battling.  She would often remind me – we are paying it forward.  That sort of compassion and love is not something you see everyday.

So Tracey, thank you for changing my life and the impact you made on me.  I admire you and everything that you did.  I will hang tight to the memories we shared and I promise to continue your fight.  It was an honor and my privilege to work alongside you in this mission and I promise to make you proud.

Rest in peace, my dear friend and I will see you again.

You Get What You Give

Are my eyes deceiving me, or are we really midway through August?  This means I’ve been on the job for a month already, and if the first month as Executive Director has taught me anything, it is that this disease is more prevalent and devastating than I think I ever could have imagined.

While fundraising and relationship building is the fun part of the job, I spend a large portion of my time meeting with the various hospitals and talking with patients and caregivers in need of support, and that is the most rewarding.  As I said when I first began this blog in 2013, I wanted to share my experience to not only meet fellow brain tumor survivors, but to be a source of hope for those who are going through this today.  I have even more admiration for our first Executive Director as I knew the job and duties covered an array of demanding and time-constraining tasks, but every day truly brings something different.

The CTBTA is proud to host the Gray Ribbon Club, a support group for patients and caregivers to meet with us to share our journeys of this disease.  We are not doctors and we are not psychologists.  But we, at the CTBTA, have all lived this disease and turned it into a positive and we want to share that experience.  Our meetings are not held in a sterile, cold hospital, but rather in an inviting setting, such as a coffee shop.  During our meeting last week, tears of both sadness and joy were shed, and nobody should feel wrong or bad about doing that.  I am overjoyed by the progress of our participants.  Witnessing the continued improvement in one particular attendee’s speech and word-finding skills causes the hairs on the back of my neck to rise.  Yet, with each celebratory round of applause, there are those raw moments where we share those dark and scary thoughts that nobody likes to talk about, but in this group, we have all been there.  As another participant shared, this is a daily battle and we need to find the joy in every day and the little things in life.  To this relentless battler – we’re here for you and you should never be afraid to let your guard down amongst us.

In addition to the Gray Ribbon Club, I have enjoyed building a friendship with one particular couple over the past month.  As young, thriving adults, their world was turned upside down when they received the diagnosis.  By a stroke of luck, we first met at a conference in June and exchanged contact information.  Later that month, I was hired in this capacity and we’ve been in constant contact since.  On two separate occasions, we met to simply talk and hopefully, allow them to forget about this hell they’ve been in even for a moment.  This family is tough and they taught me a lesson – “that there is nobody or anything in this world that can or will bring me down.”  You think you had a rough day?  Talk about resilience.

When the phone rings or the email notification chimes, I am there to respond and triage the issue, if need be.  Things that we all too often take for granted – the privilege to drive and get around; the opportunity to work and provide food for your family; our personalities and behavior, etc.  Each journey is different and with the help of our Board, the CTBTA is able to assist and through our patient assistance funds set up through the hospitals, we pride ourselves in offering hope to those in need.

For whatever tomorrow will bring, one thing is for certain – I will go home feeling a sense of pride in helping and working towards our ultimate goal of making Connecticut a center of excellence in brain tumor care.   I really couldn’t ask for anything more.

Celebrate Good Times, Come On!

Do you remember what you were doing exactly ten years ago, July 2, 2008?  I do.

It was 8:00a.m. and I was awake and alert, greeted by the surgical team, nurses, anesthesiologists and clinicians, as well as my family.  The day before, I learned that the cause of my double vision was a massive tumor sitting in the ventricles of my brain, complicated by hydrocephalus requiring surgery immediately.  As the preparation wrapped up, the clock turned to just about 9:00 and my family and I said our emotional goodbyes as I was rolled into the OR, but I remained confident.  When I would wake up, my life would change forever.  But how?

Admittedly, I never thought I’d say this, but this has been the best roller coaster ride I’ve ever been on.  Reflecting on the past decade, I’ve learned a lot about myself, but also about faith, perseverance and adversity.  In the darkest of times, I felt alone, scared and defeated – wondering when my life would take a turn for the better.

Now, exactly ten years later, I am turning to a new chapter in life as I say goodbye to my colleagues at the United Way and embark on the journey at the helm of the CT Brain Tumor Alliance, Inc. as the Executive Director.

More than ever, it is clear that this path happened for a reason and I am so grateful for my newfound appreciation for life and I live every day to the fullest.  So, for today, I would like to simply say “thank you” to everyone who has played a part of my life these past ten years.

Mom and Dad; Jackie, Wayne and Stephen; Ashley; my extended family and friends; my partners in this quest to find the cure; my friends and colleagues at the CTBTA; and last but not least, Dr. Piepmeier, my nurses, clinicians and therapists – THANK YOU.  Without each of you, I’d be lost at sea.

I am eager and excited to begin this journey to make Connecticut a center of excellence in brain tumor care.  I am honored and humbled, and look forward to working with the Board in my new role, deepening relationships, as well as building new ones, assisting patients and families as they adjust the sails, as well as supporting the endeavors that will be undertaken to make a brain tumor diagnosis less scary and ultimately, help find the cure.

For the past ten years, I have searched for the meaning behind all of this, and I am excited for this new beginning.  First things first though, a trip to Newport and Bristol, the place where this adventure began.

High Hopes

Admittedly, I have been quiet of late – perhaps too quiet.  Fear not, all is good…

First and foremost, for the first time in nine years, May came and went without a visit to Yale for a MRI.  However, I couldn’t stay too far away and these visits were happy ones.   Along with my colleagues from the CT Brain Tumor Alliance, we presented the Yale Brain Tumor Center with a check for $20,000 for patient assistance funds at the Smilow Cancer Center and to support their ongoing brain tumor research. 

My surgeon and I exchanged a hug and a few words and I joked with him that I missed him and wondered if he had erred in not scheduling my MRI.  After years of battling, it felt good to finally share a laugh.

The CTBTA also presented funding to Hartford Hospital, St. Francis and St. Vincent’s and we will be visiting Connecticut Children’s Medical Center and the UCONN Health Center in the near future.

Aside from our check presentations, the CTBTA has been very active of late, and I am delighted to share that we recently added five new members to our Board.  Please join me in congratulating Cheryl Italia, Dan Tapper, Dr. Alexandra Flowers, Aisha Khan and Stephanie Simmons!  We are so lucky to have these five individuals join our mission and work to forge an even stronger alliance!

The CTBTA also supported “A Thoughtful Approach in the Fight Against Brain Tumors: Personalizing Care for the Best Outcomes”, a seminar hosted by the Smilow Brain Tumor Program for patients and caregivers.  Dr. Jennifer Moliterno presented on state-of-the-art neurosurgical approaches to optimize removal of brain tumors, even making inoperable tumors operable and neuro-oncologist, Dr. Zac Corbin provided an overview of clinical trials and treatments post-surgery.

Aside from my work with CTBTA, my family and I are hard at work, planning for another successful Playing for the Cure: Brainstormin’.  The fundraiser is being held on Friday, September 14th at Stony Creek Brewery and we cannot wait for the day to arrive!  A huge THANK YOU to the companies who have already committed as a sponsor and to our many friends and family who are supporting this event again.  We are excited to announce that Heat, Connecticut’s favorite cover band, will be performing this year and Stephen and Parkville Sounds, LLC will be mixing and producing the band!

But the real excitement, at least for me, will be on the night of the event, sharing with you the impact of your dollars on the brain tumor community.  Ten years ago, I was diagnosed with a very rare tumor and I am excited to share that on September 14th, attendees will hear from Dr. Murat Günel, the chair of the Department of Neurosurgery whose team conducted the research on central neurocytoma.

We will be joining Dr. Günel and his team for a presentation of their findings and to tour their lab.  I am excited to hear the findings and to see how this study will help the next patient and family that is diagnosed.  With your support over the past four years, we are making a profound impact on lives and a brain tumor diagnosis.  Stay tuned for an update!

Ten years ago, I was afraid – not knowing what to expect after brain surgery, let alone the subsequent surgeries.  I went from a hopeful lawyer to gaining employment in the non-profit world and do not intend to look back.  When we started this fundraiser five years ago, it was our way of showing gratitude for Yale, brain surgeons, clinicians and nurses all over the world.  Thanks to the unbelievable sponsors and supporters, you gave it new meaning and together, we are closer to making our goal of finding the cure a reality.

Luck Be A Lady

Life is unpredictable.

As my childhood habit of walking around with a briefcase clearly indicated, my career path was assumed from the beginning.  My high school job at a law firm, political science degree from UConn and  admission into law school only solidified my determination.  Well, surprise, surprise.   A brain tumor, a few failed attempts at the bar exam and a new-found interest in fundraising later, I found myself walking out of the law firm I worked at since I was 16 for the last time.

For my readers who do not already know, I recently joined the United Way as a partnership manager in development.  I am grateful to my former employer for taking a chance on me as a junior in high school and grooming me to succeed in anything I set my mind to.  Through my ups and downs and all of the trials and tribulations, they supported and encouraged me.  Who knows though, maybe it was meant to be?

During my first few weeks at the United Way, a lady stopped by and after her second visit, left me literally speechless.  She was not there to give me business or build upon a relationship though; her red and black outfit gave her away, my ladybug was back.  Her first appearance was when my office neighbor walked in and showed me who flew onto her hand – not even knowing my story or the connection.  The next week, there she was again, perfectly propped on the wall.

Immediately, any second thoughts melted away and I knew that this was a sign that I had made the correct move for my career.  Prior to accepting this position, I knew that a career change was necessary and would allow me to fulfill my purpose in life.  But giving up something that I had worked so hard for and that this story is so connected to was difficult.  Yet, her presence in the office gave me the assurance I needed.

The change from the private sector to the nonprofit world has been difficult at times and the road to mastering the skill set I need to succeed will be long and challenging.  However, I am eager to make a philanthropic impact on my community and to simultaneously fine-tune my ability to have a personal impact on the brain tumor community to help all the doctors, researchers and nurses who care for patients.

I have not had the opportunity to meet with the department Chair or the resident overseeing the study on central neurocytoma at Yale, but am eager and excited to see what they have learned.  I am humbled that in 2018, ten years after my diagnosis, a study will be published and a resource available for the next patient diagnosed with this very rare tumor.  Through the Cusano Family Brain Tumor Fund and through the many donations received from my readers, we are funding this important research study and collecting samples from another major university.  Back when I was diagnosed, there was not an abundance of information on this rare tumor.  Gratefully, we are on the brink of making this a reality.

My passion and pursuit to help those in need will not stop here though.  I trust that the skills I develop in my new position will allow me to make a greater impact and give hope for anyone diagnosed or who is facing this dreaded diagnosis.

Everything happens for a reason and I am content with where I am.  Though it took me nine years to come to this realization, I understand and believe that I am not an attorney for a reason and that I got sick so that I can help people.  More than anything though, I thank the ladybug for making her appearances and assuring me that this was the right move and for her continued presence in my life.

I’m On Top Of the World

 

What can I say!  I am humbled and blown away by the outpouring of love and support from so many.  To our Annual and Presenting Sponsors ShelfSpace Marketing, Carla’s Pasta and Specialty Packaging LLC. for making this night the best yet!  A HUGE thanks to Renee DiNino and iHeartRadio for being our emcee and giving us amazing coverage!  A very special thank you to Sullivan & LeShane Public Relations, Inc. and WTNH News 8 for sponsoring and bringing great awareness to this cause.  And while the list is too long, a big thank you to all of our sponsors who made the night possible and enabled us to pull this off.  Thank you Stony Creek Beer for hosting us again and your support during the month of September – you guys are great!

Nine years ago, I never would have thought I would want to talk about brain tumors, let alone that I would find it my passion.  As my doctor told you last night, I am cured of this and now it is my opportunity to give back and aid doctors and researchers find the cure, but to also be a ray of hope for those fighting this battle. Fortunately, we are on our way.

While we are not ready to share an exact dollar amount, I am pleased to share that we shattered last year’s efforts!!  Together, we took another step forward in helping doctors at Yale find the cure and I believe we will see the day.  And if you thought last night was a great time, get ready to celebrate my 10 years of survivorship in 2018!!  Get ready Cusano clan!

Thank you everyone! Check back soon or visit cusanosagainstbraintumors.com.