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Blessing in Disguise

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“It’s the scars that make you stronger,
It’s the hard times that make you wise,
It’s the sweet things only time brings,
That arrive like a blessing in disguise.”

You know the story, but eleven years ago, I was fearful and afraid, unsure if I would wake up from surgery, or what my life would be like afterwards.  Yet, things have worked out very well and after another amazing night at our sixth annual Playing for the Cure: Brainstormin’ event on Friday night, I can one-hundred percent say my diagnosis was a blessing in disguise.

As I stood at the podium and looked out to the crowd, all 300+ of you, I was overwhelmed, humbled and proud.  This was our largest crowd ever and I am so glad to see this event continue to grow and help others.  It wasn’t until after I was diagnosed that I heard and met so many people and families affected by a brain tumor and for you to come and be a part of this special event was fantastic to see.  I got to meet many of you and hope you know that you are now part of a special community with individuals who truly understand and get it, so I welcome you into the CTBTA family.  We’re gaining momentum and with special thanks to all of the media outlets that supported this event, especially the Hartford Courant, WTIC-1080, WTNH and WFSB, we will continue to expand our footprint and reach and raise awareness.

On behalf of the CTBTA, I had the distinct pleasure to honor and remember the life of June Rice by awarding three inspiring brain tumor survivors with a “June Rice Courage Award.”

Darcy, Steve and Cesar – I hope you are as proud of yourselves as the CTBTA and I are of you.  You have demonstrated such strength, resiliency and bravery and are an inspiration to everyone.    Thank you for allowing us to share your story and spread hope.  Continue fighting, and know we are always here to support you.

Kim, Melissa and your entire family – what a pleasure it was for us to honor June.  You made your mom so proud with your heartwarming speech, there was not a dry eye in the room.  Though her and I never met, I am grateful that we have connected and hope our friendship will last eternally.  As you vowed to me, you and your family have my absolute support and friendship today, tomorrow and always and we, the CTBTA, are here to support you all.

To all of our sponsors, especially the Yale Brain Tumor Center at Smilow Cancer Hospital , thank you for your tremendous show of support.  I am, and will always be, eternally grateful to you for returning me to good health and helping me find my voice in the quest to work alongside brain tumor centers in the state to help others and ensure that no family goes through what we endured in 2008.   A giant thank you to our Platinum Sponsors, Carla’s Pasta and Specialty Packaging; our Gold Sponsors, iHeart Media and Harte Auto Group; Silver Sponsors included Saint Francis Hospital and Medical Center, Beirne Wealth Consulting, Women on Wealth, BMO Harris Bank, People’s United Bank, Al Mac Motors, Harvard Pilgrim Health Care, Edge Technology Services; thank you to our Bronze Sponsors including Russo, Russo & Slania, Guida’s Dairy, UKS, Blum Shapiro and Unitas Club; and Friends of Brainstormin’ Stop & Shop and Webster Bank.  Events like this succeed because of you, and we hope that you will continue to support us until our mission has been fulfilled.

Friends, old and new, from the bottom of my heart, I thank you.  Erienne and all of the members of Blanket Statement, thank you for joining us and being a part of this memorable occasion, you were amazing.  We also want to thank Carla’s Pasta and Shoreline Cafe and Catering for donating all of the food, and to Beach Donuts for supporting us.  Last but not least, to our partner and friend, Ed Crowley and the staff at Stony Creek Brewery, I appreciate all of your support, enthusiasm and compassion for our cause.  I look forward to sharing the amount we raised with you soon, and planning for 2020 very soon, but until then, let us rejoice and celebrate this achievement.

“It’s the sweet things only time brings,
That arrive like a blessing in disguise.”

Hallelujah, Hallelujah

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CTBTA_LOGO_Standard-RGBPlaying for the Cure: Brainstormin’ is 30 days away!  Along with my family and the Connecticut Brain Tumor Alliance, I am really looking forward to another great year and building on the success we’ve had since 2014.

We’ll be back at Stony Creek Brewery in Branford for this annual event that celebrates brain tumor warriors, caregivers, doctors, nurses, family and friends as we gather together in our quest to find the cure and improve treatment methods.  I cannot say enough about the staff at the brewery, including Ed Crowley, Ali and Norm – you three make this a great event, and I am humbled by you bringing additional awareness to the cause during the month of September for your Charity Wednesdays!

Thanks to our presenting sponsor, Smilow Cancer Hospital/Yale New Haven Health, we are well on our way toward surpassing our goal of raising $50,000!  In addition, thank you to Carla’s Pasta, Specialty Packaging, Saint Francis Hospital and Medical Center, Beirne Wealth Consulting, Edge Technology Services, People’s United Bank, Al Mac Motors, BMO Harris Bank, Harvard Pilgrim Health Care, Russo, Russo & Slania, UKS, Blum Shapiro, Unitas Club, Guida’s Dairy, Stop & Shop and Webster Bank!  We could not do this without you and your loyalty over the years.  A big shout out to iHeart Media for your support and partnership with us, and to Renee DiNino, our emcee for the fifth straight year – we appreciate the enthusiasm and passion you exude. 

What began as a “concert” has morphed into a fun night out, all for a great cause.  We’ll have live music by Blanket Statement; pasta prepared by our friends at Carla’s; sandwiches and wraps donated by Shoreline Cafe and Catering; the best donuts from Beach Donuts; an amazing raffle and live auction which will include two tickets next to the dugout for the Red Sox/O’s game on September 28th, thanks to Mary Beth Rossi; as well as a separate raffle for the street scooter donated by Al Mac Motors.  Better yet, we are offering anyone that buys a ticket and raises $250 in donations or through a sponsorship a three-hour open bar (just be sure to bring a designated drive or Uber for the night, please!).

However, saving the best for last is the announcement of our decision to honor and celebrate the life of June Rice who passed last December after a courageous and hard-fought battle with brain cancer.  Though I was never fortunate enough to meet June, I am blessed to have formed a friendship with her son-in-law Ed Crowley, the owner of Stony Creek Brewery, and his wife Kim.  Late last summer, when Ed shared June’s diagnosis with me, my heart broke.  Always in my thoughts and prayers, I messaged him from time-to-time and I sensed hope and comfort when he sent me a photo of our poster promoting last year’s event in her room at Smilow.  The week following her passing, Ashley and I went to see Nick Fradiani play a holiday show at Infinity Hall in Hartford.  Seated two rows in front of us were Ed, Kim and their entire family.  Unbeknownst to me at that moment was the connection between Nick and the Crowley family, but suddenly, in the middle of the show,  Nick spoke about June and his friendship with Kim and her family.  His words were strong and poignant as he paid tribute to her by singing a beautiful rendition of Hallelujah, one of the songs he performed at her services.  Along with everyone else in the theater that night, I was moved and felt the hairs on my neck stand straight up.  This memorable and beautiful moment was the impetus that brought the aforementioned idea to life.

A couple months later, I met with Kim and Ed to discuss some ideas I had for the event.  As we began talking, it did not take long for me to realize what an impact June made on her family.  I wanted to do something special and kicked around some ideas internally and eventually, I landed on the creation of the June Rice Courage Award.  This award will be presented to three patients treated by June’s surgeon, all who embody her spirit and fight, and which I hope will serve as a permanent fixture of her legacy.

Through efforts such as this fundraiser and the awareness that results, I am confident that we will move the needle, even if just a little at a time.  IMG_0289 copy Doctors and researchers are hard at work, looking to learn as much as they can about brain tumors and their genetic makeup to create targeted and precise treatments.  The day will come, I am sure of it; but until it does, the CTBTA will continue to provide hope and support, as well as funding for these important milestones.

If you have not done so yet, check out the link above to purchase your tickets and make a donation.  I hope to see you there!

Event Details

Date:  September 20, 2019
Doors Open:  6:30pm
Ticket Price:  General Admission – $40.00 through 9/19.  $50.00 day-of, if tickets remain.  Free for Brain Tumor Warriors
Live Music:  Blanket Statement

For tickets, donations and sponsorships, visit: https://ctbta.rallybound.org/brainstormin

A Hero Lies In You!

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“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.

Now, I’ll get back to final preparations for the CTBTA’s 5K next Saturday’s.  For information, visit https://www.ctbta.org/events/path-hope/event-info/.

We’re All In This Together

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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:

Blinded Me With Science

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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…

Kind and Generous

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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.

High Hopes

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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

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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 Didn’t Understand It Way Back When; But Sitting Here Right Now, It All Makes Perfect Sense

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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.

I’m On Top Of the World

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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.