Blinded Me With Science

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…

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.