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Anyone who has been touched by melanoma understands first-hand the vital importance of the Children’s Melanoma Prevention Foundation’s mission of preventing skin cancer one child at a time through education and advocacy. Although we are always motivated to spread our message, we are also keenly aware of our organization’s finite resources and we are always looking for new ways of expanding our reach.

That is why we decided to invite a group of very smart, talented and motivated supporters of the foundation to join us for a few days of brainstorming sessions, mixed with rest, socializing and relaxation. Our friends at Canyon Ranch made it possible for our participants to take advantage of a highly discounted in this perfect backdrop for our productive and inspiring summit in Lenox, Mass.

From the moment we arrived, the ideas were flowing and new connections were being forged. CMPF gained invaluable insight on how to better capitalize on our brand, maximize our outreach strategies, deliver our message and raise the necessary funds to support our mission.

As board chair of CMPF, I am incredibly grateful to everyone who participated in our Canyon Ranch discussions. Not only did we enjoy ourselves immensely at a beautiful place and in the company of incredible people, we also learned a great deal about how to move our organization forward.

Skin cancer is the most common cancer in the United States, with one American dying every 45 minutes from this largely preventable disease. Our mission is clearly as critical as ever, and we have much work to do. We hope you’ll join us.

Day Capital Hill 2019 “What am I doing here?” “What in the world do I have to offer?” “Please don’t make me say anything. I don’t have any expertise, and will sound stupid and make a fool of CMPF.”

These were the thoughts that were going through my head in early September as I sat in Washington, D.C. attending the 2019 American Academy of Dermatology Association’s Legislative Conference. My name is Pattie Day and I am a 51-year-old mom and an elementary teacher’s aide from Ilion, NY (Central NY). I am married and blessed to be the mother of three sons. I have a good education under my belt, but no letters, like RN, NP, PA, MD, PhD, etc, after my name. So why was I there?

Recent news headlines about the safety of sunscreen ingredients have caused some parents to question whether it is safe to use these products on their children.

A little background information might help clear up some of the confusion. The Food and Drug Administration (FDA) classified sunscreen as an over-the-counter (OTC) medication in 1972. To qualify as an OTC medication, “the drug must have low potential for misuse and abuse, as well as safety information showing that the benefits outweigh the risks of the medication”. The FDA uses rulebooks or monographs to establish indications, dosing, and warnings. The monograph establishes conditions under which active ingredients are “Generally Recognized As Safe & Effective (GRASE).

In 1978, the FDA issued its initial sunscreen monograph warning Americans that “overexposure to the sun may lead to premature aging of the skin and skin cancer”. In 2011, the FDA issued its final ruling on sunscreens to ensure that “currently marketed sunscreen products were appropriately labeled and tested for UVA and UVB protection.” The FDA went on to say that the “final ruling did not address issues related to sunscreen active ingredients”.

This February, the FDA proposed a new rule designed to improve quality, safety and efficacy of sunscreen products. They wanted to ensure that new more potent sunscreen formulations did not cause systemic side effects. There have been 16 active ingredients approved by the FDA for sunscreen use. The FDA has declared that there is adequate safety information to categorize two active sunscreen ingredients, zinc oxide and titanium dioxide, as safe and effective or GRASE. Since two other active ingredients are no longer available for commercial use, the FDA proposed safety testing to determine if the 12 remaining active ingredients were safe for regular, long-term use.

Hatherly Shaed Structure with Labadias 2 What it took to install a shade structure on our school grounds By Katie Labadia (Guest Blogger)

A startling lack of shade on the playground at my children’s school became a topic for discussion at the year’s first Parent-Teacher Organization meeting in September 2015, after some surrounding trees had been cut down over the summer. With a growing awareness of melanoma and skin cancer on our minds, we formed a Sun Safety Committee. I became chair.

I have been passionate about sun safety for many years, not only because I am fair-skinned but also because I lost my mother to melanoma. By taking on this cause, I was hoping to honor my mother, protect my children, and educate our beautiful seaside community about skin cancer prevention. My role evolved into my arranging a sun safety educational program, advocating for sunscreen at school, researching shade structures and fundraising.

The PTO decided that fundraising would be the best way for our school to pursue this project. I contacted the Children’s Melanoma Prevention Foundation, which agreed to provide its SunAWARE Curriculum, to help us research shade structures, and to assist in fundraising. On CMPF’s recommendation, I contacted an Australian company called Sailshades that manufactures its products in Texas. The shades were attractive, blocked UV rays, came in a variety of colors and could be easily taken down for our New England winters.

Why We Do This! Featuring Jason Ader (Corporate Sponsor) and Tori DeMaio (Advisory Council)

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Why We do This 1

The Finger of God...LIVING with Metastatic Melanoma

By Myra Cacace GNP-BC

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I grew up in North Miami Beach, Florida in the 1960s and early 1970's. I was one of those red-headed light skinned people, who wanted to be tan but only succeeded in getting more freckles. SO I added the iodine to the baby oil, slathered it on and fried like bacon for hours on the beach. That was before the days when we learned about the unhealthy consequences of too much sun exposure.

So of course, when I learned that this was harmful, I stopped those bad behaviors switching (reluctantly) to sunscreen with SPF 4 or 8. And since I live in Massachusetts now, I only used sunscreen when I was on the beach. In my more mature adult years I never really burned, but did find out that I had a significant amount of sun damaged skin. Who cares? I thought...I'm no fashion model, but I did stop spending so much time in the sun.

Fast forward to April 2017. I got a new job and they wanted me to have a TB test for my pre-employment physical. Since I already reacted to this skin test I had to have a chest X-ray instead (this has to happen every 5 years and my next one was not due until April 2019). Two days before starting work I got a call that was the beginning of big changes in my life.

The X-ray showed that something was growing on my lung. More X-rays...CT scans...MRIs...PET scans...removal of the right middle lobe of my lung (October 2017) and a surprising and perplexing diagnosis

STAGE 4 METASTATIC MELANOMA!

Melanoma Incidence Rates in the UK and Prevention Methods by Siva Veeramani MBBS, BMed.Sci(Hons), MRCS, MBA ,FRCS (Guest Blogger)

Melanoma is the fifth most common cancer in the UK, affecting approximately 15,400 people each year. The incidence of malignant melanoma is increasing at a faster rate than any other cancer in the UK. Since the 1970’s the incidence of melanoma has quadrupled, and this trend is continuing. This is particularly worrying in men where the increase in incidence is the second fastest to grow over the past decade.

Melanoma is now the most common cancer in young adults aged between 15 to 34 years of age. In this age sub-group females have a higher incidence than males. However, these are crude statistics and there is little research on the exact etiology of melanomas in this sub-group (e.g. host factors such as ethnicity or environmental factors such as behavioural risks).

applycoverenjoysplash Enright Melanoma Foundation Partners to Provide Free Online Sun Safety Programs

We share the same belief as the Children’s Melanoma Prevention Foundation that education is key in the fight against skin cancer. Youth spend a significant amount of time outdoors, and with skin cancer rates dramatically increasing, it's important to teach them about good sun protection habits starting at an early age.

The Enright Melanoma Foundation, is a doctor-led, prevention-focused, non-profit organization whose mission is to raise sun safety awareness and to help prevent melanoma through education and early detection. We are transforming the way we learn about sun safety.

Our skin cancer professionals have developed free, online programs called the Enright Sun Safety Certification™ programs for ages 5 and over. The programs use the Enright Sun Safety ACE™ to guide the learner through topics. The ACE represents an important, easy to remember message: Apply Cover Enjoy ™.

Kathy with Dad My Father’s Parting Words by Kathy Howie

My father grew up in South Boston playing and boating at the local beaches and harbor. When I was a child he took us for walks on Castle Island every Sunday. My brother developed a bone disease when he was six years old involving his hip. The doctor suggested that he swim for physical therapy and get lots of sunshine (vitamin D) so his bones would grow.

That began my dad’s obsession with exercising outside. He put in a swimming pool so my brother could swim – and of course a salt water swimming pool so we could get a really good tan in the process. As a family, we rented a cottage on a lake each summer, took weekend trips to the ocean and winter trips to the Caribbean. The goal was to be healthy and get a nice tan in the process. We never used sunscreen as it was practically unheard of in the 60s and 70s. We used baby oil to get that good tan. My mother would constantly throw us outside to “go get some sun”. They believed that a tan was a sign of good health. As my parents aged they spent their winters in Florida soaking up the rays and getting the darkest tan that was evidence of a good vacation and looking healthy.

In 2005, my father became concerned about his moles and became faithful about seeing his GP and a skin doctor. He had a few moles removed. One that was on his forehead was removed a few times but always turned out to be benign. However, it always grew back. Because it was not cancer the doctor wasn’t too pushy about having additional surgery.

After seeing a new doctor in 2011 he had the mole biopsied again and this time the diagnosis was melanoma. He then had additional surgery including removal of lymph nodes that were clear. Five years later, a spot appeared on his lower hip. Somewhere the sun had never seen and we knew it was not good. It was in fact a melanoma – a metastatic melanoma. It had spread throughout his entire body. He was dead in 3 months.

I believe the lack of knowledge that the sun’s rays can be deadly and the sun worshiping culture of my parents’ generation contributed to my father’s death. Since that diagnosis, I have changed my lifestyle but I know for me it may be too late. The damage may already have been done. My dad regretted his lack of knowledge and choices regarding the sun. One of my father’s last words to me were to “stay out of the sun and wear sunscreen”.

I remember his words and have decided to pass this warning on to a new generation. My Dad was a good man and loved mentoring others. I believe educating kids about sun safety is something my dad would be proud to be a part of. I want sun protection to become something each child does without thinking – like bike helmets and seat belts. No one deserves to have their life cut short because they didn’t know that the suns rays could cause cancer and that sunscreen could prevent it.

Adapted from CMPF Friend and Volunteer Pattie Day’s message at the CMPF Gala Fundraiser in April 2018:
jacks senior pic 1 My son Jack was diagnosed with melanoma on November 9, 2009. He was only 16 years old, just beginning his junior year of high school. It started with a single mole on the top of his head. His treatment journey began at Roswell Park Cancer Center in Buffalo, NY, encompassing three surgeries and a yearlong course of Interferon treatment. In 2011, we were told that the cancer had spread to his lungs. It was at that point that our path, with the direction and support of his surgeon at Roswell, brought us to Massachusetts General Hospital. We were blessed to have Jack in the care of Dr. Keith Flaherty, Dr. Donald Lawrence, Dr. Ryan Sullivan, Krista Rubin, Riley Fadden and their entire melanoma team.
Four years later, on August 7, 2015, we lost Jack, just three weeks before his 22nd birthday. Throughout his six-year battle, Jack faced his diagnosis with faith, strength, and quiet determination. He educated himself on what HE could do to give his body the best fighting chance and he did it all. He left no "what ifs."

Unfortunately, I found myself with many "what ifs." When I came to terms, somewhat, with the fact that I could not change the past, I knew that I somehow had to change the future. I needed to do something to honor Jack. I needed to do something to fill my time and hopefully help to ease my pain. I had two questions that needed answers:
1. What could I do to honor my son?
2. How could I begin to thank his team of doctors? How could I thank them for the time they gave us with Jack, for the compassion they showed us all and for the work they have done and so tirelessly continue to do in THEIR fight against melanoma?

Eventually, I found these questions could be answered with one simple yet very important word: EDUCATE.
As you may know, melanoma is highly treatable, often curable, when caught early. More importantly, melanoma is highly preventable. Each and every one of us, here and everywhere, are exposed to the sun's harmful rays each and every day. And yet, like myself, too few truly understand the danger of unprotected sun exposure. I now live my life wondering, “If I knew then what I know now, would Jack still be here with us today?” Someday, I will know that answer. Until then, I want to do what I can so that no other parent will ever find themselves asking that same question.
How can I educate as many people and children as I can? The fact that I am a teacher's aide in an elementary school gives me the perfect audience to start with, but it is still a daunting task to even know where to begin. Fortunately, when I reached out to Jack's doctors at Mass General for guidance, Krista Rubin introduced me to the Children's Melanoma Prevention Foundation.