Tag Archives: fundraiser

Kind and Generous

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

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

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

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

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

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

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

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

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

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

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

Luck Be A Lady

Life is unpredictable.

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

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

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

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

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

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

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

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

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

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

 

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.

Twenty-Four Seven, It’s A Labor of Love

Well friends – the day has come where I can FINALLY share with you the success of Playing for the Cure: Brainstormin’.  The timing is good as the news has been very negative of late, no matter which party you affiliate with.  So let me cut right to the chase and end the anticipation…

Along with my family and friends, we returned to Yale today on a happy occasion.  No MRI, no office visit – instead, we went with a check in hand with the net proceeds and I am ecstatic to share with you that, this year’s donation was $37,250.00!img_1526

As I handed over the check and in my remarks, I had a moment of reflection.  As I told Dr. Piepmeier and his fellow neurosurgeons, as well as the staff at the Yale Brain Tumor Center, but for them and without their support and care for me, as well as the assurances provided to my family, I would not be here and my family would not be giving their time year after year to raise money to support their research efforts.  It truly is a labor of love.  “Its a full time job, the work’s never done.  Twenty-four seven, it’s a labor of love.”

I have said it before, and I’m going to repeat it here.  But for our sponsors and all of those who contributed and helped to make this year such a success, today’s donation never would have been possible.  Thank you again to our sponsors – ShelfSpace Marketing, LLC, Carla’s Pasta, Specialty Packaging, Beirne Wealth Consulting, Edge Technology Services, Stop and Shop, Unitas Club, Sardilli Produce, iHeart Media, Henry, Raymond & Thompson, LLC, Liuzzi Gourmet Food Market, Guida’s Milk and Ice Cream, The Farmer’s Cow, Severance Foods, Updike, Kelly & Spellacy, P.C.,  Blum Shapiro, Al Mac Motors II, Channel 3 and WTNH.  A huge shout out to Stony Creek Brewery for not only working with us to make this event run so smoothly, but for your extremely generous contribution toward the fund.  And to every single person who came out to share in the night and celebrate with us as we raised money to  help find the cure, thank you.

Going into 2016, my goal was $20,000.  But by early June, after the sponsorship letters were sent out and the checks started rolling in, I upped the goal to $25,000.  Yet never did I imagine, or envision, being able to hand over this sum of money, but let me tell you – I am so proud to do so, and cannot express how grateful I am for each and every one of you!

Today, Dr. Piepmeier shared his continued plans for use of this money, and this includes investing this money into various research projects that he hopes will lead to breakthroughs in treatment options, as well genetic testing.

Together, with the support of the Yale Brain Tumor Center and other facilities throughout the world, the cure to brain tumors will be found.  However, until that time, I remain committed to putting together this fundraiser for Yale as a way of saying “thanks” for saving my life and giving me a second chance at living.

I am forever grateful for my family and friends who got me through these dark days and allowed me to pick myself back up and continued on with my life.  But I am also thankful that you have helped me to explore and find my passion, and that is being an active part of the brain tumor community.

Oh What A Night

The third Playing for the Cure: Brainstormin’ is in the books and has truly set the bar higher for the future of this event.  There is so much I want to talk about that it is difficult to determine where to begin.  I know the number one question everyone wants answered is “how much was raised?”  While I wish I could tell you, donations are still trickling in and the final accounting has not yet been completed; however, I am ecstatic to share that we have shattered the amounts donated the first two years!  Thank you to each and every person who attended, bought raffle tickets, participated in silent auction, partook in the live auction and my lucky cousin Xander, hope you enjoy that scooter!  A big thanks to you all!

The night would not have been possible without our annual sponsor ShelfSpace Marketing, LLC and our presenting sponsors Carla’s Pasta and Specialty Packaging.  I was, and still am, in shock by what I witnessed.  The lovely and wonderful Carla Squatrito, the Founder and President of Carla’s Pasta, surprised my family and I by chartering a bus of 40+ people to the event.  Words alone cannot express how grateful and surprised I was for this support, and I know that I speak for my family as well, how greatly appreciated and generous this gesture was.  Also joining us was Chris Orsini, the Managing Partner of Specialty Packaging, along with his wife, Linda. To both companies, I cannot express my sincere gratitude in helping to make this year the success that it was and for your show of support of this cause and dedication to helping find the cure.

Thank you Beirne Wealth Consulting, Edge Technology Services, Stop and Shop, Unitas Club, Sardilli Produce, iHeart Media, Henry, Raymond & Thompson, LLC, Liuzzi Gourmet Food Market, Guida’s Milk and Ice Cream, The Farmer’s Cow, Severance Foods, Updike, Kelly & Spellacy, P.C.,  Blum Shapiro, Al Mac Motors II, Channel 3 and WTNH: you made this night possible and are giving hope to those battling a brain tumor diagnosis.  And to every single person and company who donated an item for the raffle or auction – THANK YOU!  Also, a huge thank you to Jillian Shugrue who reached out to me and donated her photography skills and time to photograph (and video) the evening – you did an amazing job!

But what would the night have been without the music from the talented duo Ja2M and the awesome Wise Old Moon?  Your time and skills were so greatly appreciated and I only hope that you enjoyed yourselves as much as everyone enjoyed your sounds.  I hope it was evident from looking out into the crowd how much the crowd enjoyed you guys – I received many great compliments on both bands, so hats off to you!  When I think of the future of this fundraiser, I have longed for a true “festival” with multiple bands and styles of music and you both got the ball rolling in that direction.

In addition, I’d like to thank and recognize Stony Creek Brewery, our host and tremendous partner in this fundraiser.  I am humbled by your support and willingness to partner and work with us throughout the planning stages to the day-of coordination.  Additionally, I would like to thank Ed and Ali for their extremely generous contribution during the month of September.  You took me by complete surprise when you informed me of Charity Wednesdays for the month of September and never could I have imagined such a generous contribution and act of kindness.  You were both so accommodating and great to work with –  I thank you again, and look forward to next year.

Last but not least, and most importantly, a BIG thanks to the Yale Brain Tumor Center and especially, Dr. Piepmeier.  As noted in his remarks, the morning of the concert, Yale went live with its new addition to the website intended to educate patients, survivors, caregivers and families.  The addition of Brain Tumor Patient Education consists of a wealth of links and information put together by doctors, nurses and myself to assist and guide anyone diagnosed with a brain tumor, or their family, through this long journey.  When I was released from the hospital in 2008, I had nowhere to turn nor anybody to talk to about what I was feeling.  As I told the staff at Yale, they needed to give patients and families a place to turn to for answers to questions such as “where do I go from here?” and to provide them with an assurance that they are not alone and provide resources, and “Life After a Brain Tumor” should give some insight.  Collectively, you all changed my life, as well as that of my family, and I could not be happier than to host this fundraiser for you.  I am excited to discuss with you how you plan to use the money donated this year and what breakthroughs you think may be on the horizon, while further enhancing the website.

However, for me, the best part of the night was seeing and meeting fellow brain tumor warriors and survivors and their families.  To be able to put a name to the face, or to meet someone for the very first time and hear their story and let them know that they too can get through these hard times is all that I strive for.

Fortunately for me, I am now cured of this tumor but that does not mean my battle against brain tumors is over.

It is just getting started…