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!
“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:
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.
This past Thursday, we made a visit to the Yale Brain Tumor Center to present the net proceeds of our fundraiser. The majority of hospital visits are not fun, but this day is always filled with smiles because of the hope that it inspires. The collaboration between Yale and my family is truly special and something that I know each of us takes to heart. I cannot thank my family and friends who helped to make this year such a huge success and cannot wait to top it in 2018 as we celebrate my 10th anniversary!
Thank you, Wise Old Moon, for headlining this event and for your enthusiasm to be a part of this event the past two years. I wish to again thank our corporate sponsors – ShelfSpace Marketing, LLC; Carla’s Pasta; Specialty Packaging; Al Mac Motors; Beirne Wealth Consulting; Sullivan & LeShane, Public Relations; iHeart Radio; WTNH; Stop & Shop; Bank of Montreal; People’s Bank; Connecticut Public Broadcasting Network/CPTV; Edge Technology; Unitas Club; Updike, Kelly & Spellacy, P.C.; Henry, Raymond & Thompson; Guida’s Dairy; Blum Shapiro; Sardilli Produce; Webster Bank; and Russo, Russo & Slania, P.C. Thank you Shoreline Cafe & Catering and Beach Donuts for donating the sandwiches, donuts and coffee! To every individual and company that donated items to our raffle and silent auction, your support is appreciated. And last but not least, thank you Stony Creek Brewery for being an awesome partner in this venture. The support and awareness that you are bringing to brain tumors is amazing and appreciated by everyone affected by this diagnosis.
Through everyone’s efforts, a grand total of $42,800 was donated to the Yale Brain Tumor Center this year! As a survivor of this diagnosis, with my family and friends who wanted to help my doctor and his team in some way, I am in awe that between our four concerts and the donation from the Denver Foundation, we have donated $156,650.00 in four years! The money we have donated thus far has been used as seed funding to help doctors and residents take their research efforts from concepts into reality.
To date, there has been a dedicated undertaking to understand more about the triggers of particular brain tumors and their drivers. Research is also ongoing to develop nanotechnology to safely administer viruses to particular tumors to destroy the cancer cells, but without harming the brain.
Additionally, within the next six months, Yale will be publishing a study of great interest to my family and I. A couple of years ago, I was contacted by a resident at Yale who was studying the genetic drivers of central neurocytoma. I donated a blood sample and a piece of my tumor was obtained by the lab to understand the cause of this mutation. The Chair of Neurosurgery at Yale is overseeing this study and shared this status update with me. I plan to meet with him and the resident working on this study to learn more about their findings before the paper is published and I will share these updates at a later date, as well as the resident’s thesis. What was told to us, and which comes as no surprise to any of us, is that this tumor type is vastly different from any other tumor and does not share many commonalities.
Life is unpredictable. This is not even something you can conjure up in a dream, but if you had, and told me it would happen to me, I would have said “no way”. Yet, it did happen and I survived and because of it, I am a better person. I have a new outlook on life and a new normal.
That double vision nine years ago – it all makes perfect sense now.