As children we believe The grandest sight to see Was something lovely wrapped beneath the tree But Heaven only knows That packages and bows Can never heal a heartached human soul
No more lives torn apart That wars would never start And time would heal all hearts And everyone…
It’s been a while since I wrote you and I’m taking a leap of faith as I write to you again this year, but what do I want for Christmas???
Well, since you asked, here it is. It’s a bit unusual, but it’s my grown up Christmas list.
This past year, I was named the Executive Director of the CTBTA and the position has been extremely rewarding and fulfilling. I truly believe that in the not-too-distant future, our state will be a ‘center for excellence’ in brain tumor care and treatment, but there is much work to be done and maybe you can help! So, here goes nothing…
First, please help the hard work of our organization so that we may continue to enable the doctors and researchers to advance treatment methods. Brain surgery is certainly not fun and takes months, if not years, to fully recover, so we want to see the day that surgery can be less invasive and to continually improve the standard of care for brain tumor patients.
Next, we need more clues and positive results to understand the drivers and causes of a brain tumor. Help us to understand the underlying cause of a brain tumor so that the doctors and surgeons could take proactive measures to treat this disease. Completion of this will help bring us my third wish, the cure!
Fourth, please bring those who are suffering comfort and support. Whether they are recently diagnosed; a brain tumor warrior; a caregiver; or a parent, friend or family member of someone who is battling this diagnosis or coping with the insurmountable loss, everyone needs additional help and hope. We pride ourselves on doing the best we can do provide hope and support, but our reach only goes so far and additional resources are needed.
Finally, the brain tumor community could use more joy and laughter. This is a difficult diagnosis to cope with, but hope, laughter and joy are the best medicine.
I know this is a lot, and you might not be able to help with everything this year, but it would mean the world to all of us in the brain tumor community if you could help in any way possible. I’d appreciate it!
p.s. I’ll leave cookies and milk!
p.p.s. Don’t forget gifts for Ashley and Coddington!
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.
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 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.
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:
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.
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…
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.
Growing up, I always enjoyed puzzles, despite my short attention span, growing frustrated as I tried to put them together. As I sit here and write this, the irony sets in as I now view my life as one giant puzzle and slowly but surely, a complete picture is beginning to take shape.
I have my health, happiness and career pretty well set. There’s a couple of other parts that are still coming together, but I know that’ll be only a matter of time.
As I’ve alluded to a few times, following my surgery in 2015, I was contacted by a resident at Yale who was undertaking a research project to better understand the underlying genetic alterations that cause neurocytoma. The research lab obtained a portion of my tumor and I agreed to donate a blood sample to allow them to analyze my DNA to look for any genetic markers.
For everyone involved, we all wanted answers on this particular tumor and to immerse ourselves in knowledge about its origins, genetic markers and hopefully, how to treat it at an early stage.
A neurocytoma is a very, very rare tumor, as evidenced by the literature, or the lack thereof of this tumor type. As such, finding an abundance of these tumors in Connecticut, or across the country, was difficult.
At the outset of the origination of The Cusano Family Brain Tumor Fund, funds were used as seed funding to help propel research efforts forward to an effective treatment of any type of brain tumor. This past fall, when my family and I made our annual visit to Yale to present the net proceeds for 2017, a proposal was made to us that a portion of the funding be used to complete the study on neurocytoma, which my family and I emphatically agreed to. Through the use of the funds raised through Brainstormin‘, additional samples would be obtained from around the world to allow researchers to continue to test their hypothesis.
Fast forward to June 18, 2018. With my family, friends and sponsors at my side, we spent the day at Yale to hear the results of Phase One of this project and tour the research lab of Dr. Murat Gunel. The day was surreal, as it was such a satisfying moment for all of us to realize the impact our dollars have made and the lives we hope to affect in the future. It is our collective hope that no other family has to endure what we did and I am beyond thankful to our donors for their support, as well as the doctors and researchers at Yale for their dedication and efforts on this project. “For your kindness, I’m in debt to you and I never could have come this far without you.”
I invite you to enjoy some photos and the abstract of the study prepared by the Gunel Lab, which you can hear more about on September 14th!
With gracious support from the Cusano Family Brain Tumor Fund, the Gunel Lab at Yale University, has begun to comprehensively characterize the genomic features of Neurocytoma, a rare type of brain tumor, that has long been poorly understood. In addition to the Yale School of Medicine, a large cohort of tumor samples has been collected from other international collaborators, including the University of Bonn Medical School (Germany), University Hospital of Cologne (Germany), Acibadem University School of Medicine (Turkey), Bahcesehir University (Turkey), Pittsburgh University Medical Center, University of California, and the Canada Brain Tumor Repository. Using unbiased molecular approaches, the Gunel Lab aims to understand the underlying genomic events driving tumorigenesis (formation) in these tumors. Ultimately, the hope is that these findings will lead to the development of targeted, personalized treatment for Neurocytoma, leading to improved survival and quality of life for these patients.
To this end, the Gunel Lab has used complementary genomic experiments and bioinformatics approaches on a subset of collected samples. With completion of the first round of experiments, they have successfully identified preliminary clues about the molecular processes driving and causing formation of these tumors. A second phase of experiments to further understand these mechanisms is planned, with the hope of sharing their findings with the scientific community to facilitate the development of targeted treatments for this disease. The Gunel Lab is grateful for the generous support from the Cusano Family Brain Tumor Fund, and their supporters, to continue and complete this important work for patients with Neurocytoma.
With your help, we are on the precipice of something great and I am beyond grateful and humbled by every single donor and company that has supported us year after year. Let’s help the staff at Yale get to the bottom of this by advancing brain tumor research in an effort to ultimately find the cure.
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.
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.