Thursday, May 23, 2024

Who is: JOE CAPPELLO?

PinkSmart News presents our next installment of the WHO IS series- proudly introducing the life's work of Mr. Joe Cappello. Nestled deeply in the cancer advocacy world, Joe's mission to make a difference started when his late wife, Nancy was afflicted with cancer.  Right then and there, a change-maker was driven toward a life-long crusade to bring awareness about prevention and early detection. 

FROM MUSICIAN TO MUSICFEST NATIONAL ADVOCATE
A Personal Crusade in Life Saving Advocacy

FOREWORD
By: Barrie Kolstein (Music Philanthropist & Cancer Survivor)

Music can be a viable source of fundraising and do good things for people. This goes back well before my time into the fifties and forties with The Concert for Bangladesh (George Harrison) in 1971. There's also Wembley Stadium in the nineties with QUEEN in LIVE AID-- and WE ARE THE WORLD that did tremendous good for Africa.  This inspired ongoing concerts that continue throughout every genre including the classical and jazz communities.  The New York Philharmonic, the Philadelphia Orchestra and the Dallas Symphony have all partnered with major cancer charities.  Recently (2023), the American Symphony joined with Sloan Kettering to form “American Symphony: Become a Lifesaver” to increase registration of blood stem cell and marrow donors to the national registry and improve access to blood stem cell transplants [1].  Music has a very strong voice this way. People listen…and they love and enjoy music. And if you have the right people working on these fundraisers and representing these fundraisers, it can be quite effective!


AN INTERVIEW WITH JOE CAPPELLO, CO-FOUNDER OF THE “ARE YOU DENSE” FOUNDATION
I don’t know too many people that actually plan a life in advocacy.  I'm Joe Cappello and I am the co-founder and CEO of a national organization called “ARE YOU DENSE?” – an educational foundation supporting awareness about the realities of dense breast tissue and its connection to breast cancer. 

Click photo to visit Nancy's Story
 When you are entering into advocacy work, you’re asking for challenges that comes at you 90 miles an hour. Usually, it’s because of a life-changing event that impacts you from normal to a super abnormal way- and that's what happened in my case.  My wife Nancy was diagnosed with stage 3C breast cancer. We were convinced that her cancer happened because of the lack of clinical information and diagnostic tools available at the time.  We could not avoid becoming advocates very quickly to let everyone know on a global scale just how deadly this level of ignorance and lack of knowledge actually was.  

Click to visit "Underdiagnosed"
Our passion to connect with clinicians, to research for answers and to get the word out about this apparent health problem about dense breast tissue in our community all became our new reality.  When we were faced with this challenge, we realized that we needed to inform the general public about the health concerns about breast density.  Doctors already knew about breast density and the ramifications of having dense breasts- but the growing population (40%+) of women that have dense breasts may NOT know what it means.  We wanted to build a public awareness and informational program about getting the right screening- particularly with an ultrasound or possibly an MRI as a necessary complement to the mammogram.  

POST RETIREMENT AND A SECOND PUSH WITH MUSIC
I had a couple of companies; a busy real estate office in Connecticut.  I was also a musician where I co- developed and marketed a portable drum kit. I was in charge of sales for “Traps Drums” throughout the U.S., Canada and Mexico.  It was very lucrative and had a lot of fun with it but I eventually sold the business in 20__. Managing the ARE YOU DENSE? Foundation is another form of business even though it's a very emotional and personal.  It’s hard work to do fundraising and ‘getting the word out’ demands major focus and personal resources.  

Play Video: Musicians for Cancer Causes
Since I'm a musician, I realized the strength and appeal of music to the community, such that this advocacy work was going to be funded by something to do with music, which no one else did!  So the very first event we produced was called the Are You Dense Musicfest back in 2009. It was quite a successful event and we raised quite a bit of money for the organization. We ended continuing this direction with music events, growing larger venues each and every year. We've had it in large auditoriums including the Palace Theater.  This year, we sold out the Seven Angels Theater in Waterbury, Connecticut and as fundraisers go, that's very exciting! We stay alive because of the generosity of people and we're always so grateful for all of that.


ADVOCACY: A REWARDING CHOICE OF LIFE ALTERING WORK
Before this, my wife and I were enjoying my retirement from an exhausting career set. Advocacy changed my life dramatically, immersing us both into a relentless schedule of doing public education, talk shows and group conferences.  We also formed a second non-profit called 'Are You Dense Advocacy' - dedicated to driving a national legislation. Through this form of government intervention, this legislation mandates that all mammography facilities must inform all patients with dense breasts about their condition- and employing the complementary use of imaging (such as ultrasound) for better scanning.  We went to Washington and helped pass legislation on the national stage which affects the safety and health of every woman in the country.  

Click to visit the Proclamation report

As of September 10th, 2023, 38 states officially passed this upgrade in early detection! It is understandable that you could double the amount of cancers found - and how many lives you could save with PROPER early detection.  This WIN is a message to the world about dense breast tissue and that not one woman would ever need suffer the terrible fate that my wife suffered and perished from- due to the lack of information at a time when women remained underdiagnosed.  This all became my calling in life now to be an advocate- never thinking I'd ever be one. 

Click for full story: "Supporting Diagnostic Leaders"
ON PARTNESHIPS AND A NATIONAL COMMUNITY
You never do this kind of work alone. You always need to count on the help of other people that are in different factors in life. We're not doctors but when facing a problem, you experience the side of the problem that doctors may not always see. Thanks to our excellent advisors, we complete the circle of understanding about this health issue.  Among some of the finest luminaries in cancer diagnostics and education is Dr. Robert Bard in New York City. People like him really helped make it happen for women and for our cause. He has done so much in the ways of collaborating with Are You Dense? on education, public awareness and explaining the entire science of breast density from a clinical perspective that draws more women to the urgency of early detection.  His work also attracted other docs nationwide to join our mission.  


THE CAPPELLOS' WORK SPARKS MODERN RESEARCH & CLINICAL CHANGE

Click photo for full report
2022-2024 BREAST DENSITY SCREENING & REVIEW
The Dense Breast paradigm continues to plague our population of the underdiagnosed and underserved women. uniting with public advocates and legislative change makers like the ARE YOU DENSE? FOUNDATION raises significant public awareness in both the clinical and patient communities (see news feature).  Meanwhile, a cohort study from Molloy University linked to Bard Diagnostic Imaging of NYC received great support from the medical research and diagnostic society to help spearhead a private study to collect data in underserved areas and age groups.  This pilot study helps to offer new insight and data in support of the launch of future biotech trials and public advocacy about dense breast research programs.

"Are You Dense?" Foundation Co-founder Joe Cappello joins the medical diagnostic community to promote the "Get Checked Now!" campaign. Dr. Robert Bard from the Bard Cancer Center (NYC) supports supplemental imaging including the 3D Doppler Ultrasound scanner to offer dense breast detection.  This video presents some of the latest advancements in ultrasound features to detect tumors through dense breast tissue- reportedly a significant challenge with mammograms. 

LINKING DENSE BREAST WITH BREAST CANCER
Dr. Roberta Kline reports on the increased risk of breast cancer for women who have dense breasts. Until recently, the research has been lagging in terms of what's the molecular mechanism, why do dense breasts present an increased risk of breast cancer? Without this knowledge, we can’t address the root causes, and are left with a lot of trial and error based on incomplete understanding.  It's very encouraging to know that currently there are 124 clinical trials ongoing looking at dense breasts and the relationship with breast cancer, anywhere from improved diagnostics, to treatment, to prevention, and, what’s close to my heart, to understanding the molecular mechanisms - what's happening at the cell level, at the genetic level that is causing different women to have an elevated risk of breast cancer. 


UNDER THE LENS: LIVE BREAST CANCER CELLS IN DENSE BREAST TISSUE: An observational by Dr. Noelle Cutter study explores the functional phenotypic differences that make dense breast tissue. Because it is  widely noted that women with dense breasts have a greater likelihood of developing cancer, understanding the  pathways and changes in gene expression may offer the first avenue for the enzymes enrolled and drug targets for  personalized medicine in pursuit of developing better treatment options.  (see complete article)









Ref:

1) Memorial Sloan Kettering Cancer Center and NMDP/Be The Match Launch “American Symphony: Become a Lifesaver” Campaign https://www.mskcc.org/news-releases/mskcc-and-nmdp-be-match-launch-american-symphony-become-lifesaver-campaign#:~:text=Memorial%20Sloan%20Kettering%20Cancer%20Center%20(MSK)%20and%20NMDP%2FBe,transplants%2C%20especially%20for%20people%20in


Video Part 1: Introduction & Spotlight on Nancy (Natl Dense Breast Disclosure Act)

Natl Dense Breast Disclosure Law (9/10/2024) Video Part 1