We Came, We Screened, We Found Atypical Moles

I got a call last week. The voice was unfamiliar, but the anxiety and frustration was well known to my heart. It was a mom who just found out her 14 year old daughter had melanoma; a stranger calling from California, frightened and frustrated about the lack of information offered by  her daughter’s dermatologist. An in situ melanoma was found in a mole her daughter had since birth. It was on an area of her breast that always well covered. Her daughter never tanned. The mole didn’t even look unusual! How could this happen?

I told her that “surprise” factor was the nature of adolescent melanoma and her story was all too familiar.  Melanoma in young people simply is not the same as adult melanoma which is why it is so often missed or misdiagnosed in young people. Fortunately, they found it quite early on her daughter and follow-up surgery was already scheduled. This California mom shared that she was thrilled to find The Claire Marie Foundation website, our research and possibly some answers about her daughter’s melanoma; the disease the medical professionals ignorantly believed her daughter was too young to get.

Calls such as this validates the mission of the Claire Marie Foundation. We wish someone had been there to warn us about the risk of melanoma in adolescents, children and young adults. We wish someone would have compiled and shared the warning signs and the nuances of detection. We especially wish we had faster access to removal of any and all atypical moles since melanoma grows faster and is more invasive in young people.

It takes more than sunscreen to stop this form of melanoma. Routine screening and early detection is the key, but getting a dermatological appointment can be the problem with an average wait time of three months.

Thats why the Claire Marie Foundation partners with top dermatologists to offer free skin screenings to young people. In 2017, we hosted four free screening events in April and May to anyone between the ages of 8-21 years old. Of the nearly 300 young people screened, 10% were found to have atypical moles with biopsy recommended for suspicion of melanoma. Happily, that is a decrease from our 2016 screenings, were dermatologists found 20% of the 120 young people screened had atypical moles with biopsy recommended.

These figures prove our awareness and prevention programs are working. Knowing melanoma can develop genetically or due to hormonal changes in puberty and pregnancy, screening is the best way to catch the disease before it develops – when a mole is just atypical or beginning to change. Remove the mole – remove the risk.

Equally important is the need to maintain a healthy, sun-safe,  preventive lifestyle!  Ditch the tanning booths, keep slathering on the sunscreen and invest in some UPF50 clothing.  Do it all with style and a smile, and #LiveLifeLikeClaire!

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Our CMF Arts & Design Scholarship Winner UVA Bound!

We are so excited and proud to announce that Elizabeth Liberatore is the 2017 Recipient of the Claire Marie Foundation Scholarship for Arts & Design! A Senior at Notre Dame Preparatory School, Liz is off to University of Virginia in the fall to study architecture and bring some joy, color and beauty to the world in her own way! We can’t wait to see her amazing creations! Special thanks to all of the fantastic design professionals who donated their time and expertise in judging our applicants: Katie Fico of Disney Animation Studios, Danielle DiFerdinando of Danielle Nicole Designs, Maryland’s First Lady – Mrs. Yumi Hogan – artist and MICA educator,  L.A. based Interior Designer Stacey Vuduris , Illustrator Inslee Haynes of Design by Inslee and stage lighting and set designer, Tim Swiss.

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#LiveLifeLikeClaire – One Campus at a Time

“Breathe deeply, move forward, you will feel the sunshine again.”

Claire wrote those words in her college application essay. It was a whispered thought, a mantra used to propel her through the toughest days. Little did she know those few words strung together would offer great inspiration to so many people who knew her; especially her friends as they face the emerging challenges that come with college, life and the professional world.

Now, we are blessed and so proud to see how they carry Claire’s exuberance and strength with them onto their college and university campuses as CMF Collegiate Ambassadors. Newly launched in April of 2017, our Collegiate Ambassador program boasts 55 representatives on 22 campuses nationwide sharing peer-to-peer awareness and education programs about melanoma in adolescents and young adults. It is the second most common cancer in young people and the number one cause of cancer death in women between the ages of 25 and 30.

By offering a presence at campus activities such as wellness fairs or speaking to small and large groups such as athletic teams or Greek organizations, CMF Ambassadors work hard to raise awareness of the prevalence of adolescent and young adult melanoma and just as importantly, the best way to prevent it.

Our Ambassadors do this all with style, creativity and the ever-present splash of ‘Claire Coral’. In just our first eight weeks, they managed to reach some 1600 students. Amazing! As we say, #AwarenessSavesLives!

If you are a college or university student and are interested in becoming a Claire Marie Foundation Collegiate Ambassador, let us know!

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Membership In A Most Unfortunate Club

“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.” Francis of Assisi

As any parent discovers at one point or another, it is easy to dole out sage advice to our children, but much more difficult to adhere to those words of wisdom ourselves. Over the years, my husband and I reminded our two girls that while they couldn’t always control what life tossed their way, they could certainly control how they responded to the challenge. While in the past that philosophy seemed easy enough to engage, it now is more difficult to embrace thanks to our new membership in a most unfortunate club: Parents of Children Lost to Adolescent Melanoma. It is a club we tried desperately to avoid. It is a club which guarantees life-time membership with no option of cancellation. It is a membership which redefines every aspect of your life and that of your entire family. It is a club which is growing in membership every year.

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For those of you who follow the Claire Marie Foundation are well aware, our darling Claire fell to the hormonally induced aspect of this disease. Yup, melanoma is not always about the sun! Hormonal changes during puberty can prompt the development of melanoma. Diagnosed at 14, she bounced back and kept fighting to live a vibrant teenaged existence until the beast returned to claim her at 17 years old. We are determined to find some good out of this nightmare as Claire did every day. If that means waving my club membership about, I will. The mission of the Claire Marie Foundation is to raise awareness, clarity and hope in the fight against adolescent melanoma while celebrating the joy, color and beauty Claire embraced every day. In short, at the Claire Marie Foundation, we want nothing more than to limit membership in this unfortunate club and that begins with awareness, education and early screenings. As a foundation, we personally can’t find a cure to melanoma, but we can wave the warning flag and help others create a path to early detection. As part of recommended healthcare, we screen for breast cancer, prostate cancer,ovarian cancer, even dental and eye problems. Shouldn’t we routinely screen our skin? After all, it is the only cancer than can be seen with the human eye on the largest organ in our body. If a pre-cancerous or a-typical mole is discovered early and removed before it becomes malignant, membership in this club could go way down! Have we not learned anything from the success of breast cancer and other cancer screenings?

I recently joined other unfortunate club members and scientists the Melanoma Research Alliance forum in Washington D.C. It was an impressive gathering. I was astounded at the remarkable level of world-class scientific leaders who were present to share information and listen to stories from the “trenches”; tales from patients and non-profit advocates alike. They are compassionate, dedicated medical warriors committed to treating and curing this disease and thank goodness for them! I just wish the medical world would put as much effort toward prevention and detection as they do looking for a cure. We know melanoma is one of the most aggressive and deadly cancers. Early detection is essential to survival. Yet, the mention of the need for routine skin screening seems to bring about the awkward sound of crickets in the room. There was an extensive study presented during one session that validated the positive consequences of screening. Think about that for a moment. A study? Really? We need expensive studies to tell us screening and removing the risk of disease is a good idea? Isn’t that what we call common sense?

Here is the bottom line; the medical system is not currently set up to support early screenings for skin cancer and melanoma. There is, on the average, a three to five month wait for an appointment with a dermatologist or plastic surgeon; partly because there is such a great demand for cosmetic procedures. Pediatricians and general practitioners are not always trained in dermatology which often leads to misdiagnosis. Then there is the insurance industry which often considers dermatology a specialty rather than a necessity. And we wonder why melanoma is the fastest growing cancer world-wide.

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Next month, the Claire Marie Foundation will hold it’s first free skin screening for young people. In the days to come the details and registration will be posted on our website and our social media. Following the words of St.Francis, we feel it is necessary, and possible and if we are lucky, it will lead to the impossible. Claire would like that.

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Ride With Claire

DSC_3168September 20, 2015,  Claire’s father, Rocky Wagonhurst,  embarked on a solo 630 mile bicycling trip to complete Claire’s journey to college. His trek took him from Charleston, South Carolina where Claire dreamed of starting an interior design business, onto the two college campuses where Claire had gained acceptance prior to her passing: Georgia Southern and the University of Alabama. All along the way he shared Claire’s story, raised awareness of adolescent melanoma and kept their pact of sharing an afternoon of college football together. 

“Although I have run a number of marathons over the years, I have never cycled this distance. After years of watching Claire push herself athletically, mentally and emotionally to overcome surgeries and drug treatments to stay competitive in lacrosse, cross country and aerobic competitions, I knew I needed to challenge myself as she always did. Cycling this route is a way I can honor my daughter, her amazing spirit and undaunted belief that we should embrace every moment.”

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