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College Football and Melanoma – The Toughest Opponent

NCAA Athletic Trainers have a lot to worry about when it comes to their players; ACL , meniscus and achilles tears, concussions, fractures, de-hydration, the list goes on and on.

But as we begin to wrap up the 2018 College Football season and focus on the Bowl games and the National Championship, a spotlight has been directed to a medical concern for athletes that has nothing to do with what happens on the field.

Vanderbilt University and University of Kentucky, both teams in the SEC, have faced this season without key players; two young warriors, two separate teams, facing the same battle off the field. For both, the opponent is melanoma. For both, they are facing the battle of their life.

Turner Cockrell, a redshirted sophomore from Georgia is a tight-end at Vanderbilt University. A year ago, at the conclusion of the 2017 season,  he noticed lumps in his neck. Melanoma was diagnosed and he underwent radiation treatments for 20 consecutive weeks. In July, scans showed the melanoma had spread to his lungs. Turner is undergoing treatment at MD Anderson in Houston.  https://bit.ly/2z8UkvR

Josh Paschal, a Sophomore Defensive End at the University of Kentucky and Maryland native, was diagnosed in August after the team’s sharp-eyed athletic trainer spotted lesions on his foot. Biopsy revealed Josh had indeed developed melanoma. After surgery, skin grafts and treatment, Josh is now able to get back on the field for some conditioning – although not yet ready to suit up. https://bit.ly/2qMxp5f

Melanoma is the second most common cancer in young people 8-19 with those numbers jumping in young adults to make it the most common cancer in those under the age of 29.   Genetics and hormonal changes contribute to development of the disease, but excessive UV/UVB sun exposure remains the greatest risk – especially for athletes. A study out of Stanford University has found  a typical NCAA Athlete will spend at least four hours a day, ten months a year training or competing outdoors. Thats at least 1,200 hours a year baking in the sun. Sweating and the use of anti-inflammatory medications like aspirin, advil, motrin and aleve increases the skin’s sensitivity to ultraviolet light as do antibiotics.

What’s the solution? Awareness, education and prevention – all that we offer through the Claire Marie Foundation. You see, the simple truth is this; if detected early, melanoma is highly treatable, even preventable.  Thats why at the Claire Marie Foundation, we reach out to young adults through our Collegiate Ambassador Program where more than 100 CMF Ambassadors spread awareness and education on 43 college and university campuses nationwide.

We strive to stop melanoma before it develops through the CMF Free Skin Screening Program and are working to develop better education among those who serve students and athletes through CMF professional programs such as the Claire Wagonhurst Guest Lectureship at Johns Hopkins University.

So during the holidays, as you are cheering on your favorite team, remember Turner and Josh as they pour their incredible strength and power into the “game” that matters the most; the championship of their lives. With that victory behind them, just imagine what they will do on the field in 2019. Can’t wait for that Vanderbilt – U of Kentucky game!

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“Consider Me Well Prepared” – The Courage Behind Claire’s Smile

Four years ago today, our daughter Claire Wagonhurst lost her life  to melanoma. She was just 17, a senior in high school, a young woman who had just excitedly learned she had been accepted to study art and design at two universities – refusing to decide until she heard from the third.  Although her mobility and sight  were fading – either due to disease or treatments – she  refused to let melanoma define nor limit her passion for life.  As we mark what her friends call her “angelversary”, we share with you Claire’s college application essay.  It offers a glimpse into the journey Claire endured in her three-year fight against melanoma and the deep pool of courage and strength from which she drew to live a joyful and inspiring life.  May it inspire you as face your own challenges. May it help you understand why at the Claire Marie Foundation, we fight so hard to make sure no other family faces this loss. May we all  #livelifelikeclaire

Consider Me Well Prepared    Claire Wagonhurst   Notre Dame Preparatory Class of 2015

The incessant beeping of the empty IV awakened me. Not that I slept much over the last few days with the raging headaches and the whispering of doctors and nurses as they scurried in and out of the sterile hospital room tending to my needs. This could not be happening again! The melanoma was finally going away. Could I not get a break? My senior summer had just begun and I had plans; a trip to Spain, job at the pool, concerts with my friends and college tours! I didn’t have any more time to lose to cancer! I wanted so badly to scream and cry but my head hurt too much for such human indulgences. The emotions could come later. I tucked them away in my racing heart and coached myself through it once more. “Come on Claire, you can get through this again. Dig deep, find the strength, hang on. “

It’s just one more storm to drive through.

That had become my mantra when the winds first started brewing my Freshman year. I bounded in our front door one October afternoon, exhausted from cross country practice to the bad news. It was written in my mother’s pained eyes and on my dad’s strong face. A mole on my ankle went nuts compliment of hormonal changes in puberty. My friends got zits. I got melanoma.

Just keep driving. The blinding and pounding rain will stop, the winds will ease.

Cancer would not define me. I didn’t want to become one of “those kids” who wear their disease like a cloak for all to see, evading all traditional teenaged experiences to hide in illness. Nope, this was merely a bump in my road; a detour perhaps, but nothing that would keep me from my goals. Following two surgeries and a year of treatment, we were celebrating! The melanoma was gone! I was a success story! Somehow through it all, I managed to stay on track with my academics and teenage pursuits; sports, friends, dances, community service and design studies. However, just as I began to relax and embrace the sunshine of my teenaged existence, the cumulus of change swirled in the distance. The confetti was barely swept away and I was still sporting my Sweet 16 Birthday Crown when I noticed my leg was swollen. Cue the winds. Brace for the rain. It was going to be another bumpy ride.

It’s only a storm. Just keep your hands on the wheel and eyes on the road. You can get through this.

In all, I weathered two more melanoma recurrences that year including surgery and multiple hospitalizations for treatment. I was rewarded with more scars and a lovely six month reprieve in which I soaked up the sunshine of partial remission. Little did I know in June, the storms would return.

Breathe deeply. Keep moving forward. You will feel the sunshine again.

This summer’s surge was the mother of all melanoma storms. It’s harshness lingers still, but the rays of full recovery are burning brightly. My success is deemed “miraculous” and thanks to a newly approved drug it should be the last melanoma storm I face. However, it certainly won’t be the last hardship I face in my life. Consider me well prepared.

Melanoma has taken its toll on my life; most notably stealing my innocence and the frivolity of youth. But as with all things in life there is a great gift that comes wrapped in pain if you look deep enough. I have the gift of family, friends and faith. I am proof that life is not fair. It’s best just to accept that fact. Most importantly, I know I have the strength, fortitude, humor and commitment to get through any challenge or storm that may blow my way. Although I must say a little more sunshine would be greatly appreciated.

Claire Marie Wagonhurst

 

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Beep beep! It’s Official!

In July, The Claire Marie Foundation received its official 501(c)3 certification from the IRS, allowing us to wave goodbye to our fiscal sponsor, Strong City Baltimore! It reminds us so much of Claire’s excitement at sixteen of becoming a licensed driver and having the freedom to chart her own course, we just had to share the good news with you! Now, with our own independent nonprofit status, our efforts to fundraise will be more streamlined offering better access to grants as well as public and private allocations available only to IRS-recognized organizations. With that, we’ll be able to grow our prevention and awareness programs to save even more young lives. Of course we couldn’t have gotten here without Strong City Baltimore and offer our heart-felt thanks for their guidance, wisdom and support while we learned the rules of the road!

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Thank You Baltimore Magazine #AwarenessSavesLives

It’s never easy to talk about, but we know by sharing Claire’s story and our family’s journey we can raise awareness of the beast that is melanoma and how it can sneak into a young person’s life. Thank you Baltimore magazine for sharing our story. #AwarenessSavesLives. Melanoma is the number two cancer in young people 8-29. Information on the 2018 dates for the Claire Marie Free Screening Program coming soon! 

Read the article here.

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Redbook Magazine is Helping CMF Raise Awareness

When we launched the Claire Marie Foundation nearly three years ago, in February of 2015, we hoped to let other’s know what we  discovered the hard way;  melanoma can develop in your child as a result of hormonal changes in puberty and early detection is the only way to truly nip it in the bud.  The challenge was to do that in a Claire-sort-of way; with color, style and joy.

You can then imagine why I was especially excited when I got a call from a writer with Redbook Magazine in November! She wanted to share Claire’s story and profile the success of the Claire Marie Foundation Free Screening Program. I happily gave her too much information and immediately sent more photos than could possibly be used, many featuring Claire’s beautiful smile. I knew that we would be part of a wonderful feature on non-profit organizations in Redbook’s February 2018 issue. I was honored and thrilled to know that we would be able to reach even more families, raise awareness of the predominance of melanoma in young people between the ages of 8 – 30 years and offer hope to many families feeling isolated and alone!

Still, when I walked into Barnes and Noble and saw the cover on the newsstand, I caught my breath. It struck me how excited Claire would be! I remembered a quiet conversation on the way home from her oncologist one afternoon when Claire first brought up the idea of sharing her story to help other kids. I smiled when I noticed not only was the magazine title in a certain shade of “Claire coral”, but that someone as stylish and vibrant as Julianne Hough was on the cover. Yup, my darling girl would have been over-the-moon! Fighting the disease, raising awareness but doing it with a certain level of Claire savior faire.  We did it Baby Girl! Just one more step in the right direction! As her friends say, #livelifelikeclaire!

Thank you Redbook Magazine for helping CMF raise awareness of the prevalence of this horrific disease in young people. Bit by bit – we are making a difference. Here’s the link to the article. Check it out and learn more about CMF and other wonderful organizations! Together, we can do so much!

 

 

 

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Running With Claire at the Baltimore Running Festival!!

I just love this photo!  Rocky and Claire, Daddy-Daughter, running her first 5K. She was in first grade and so proud! All smiles with her blond ponytail bouncing all the way to the finish line!

Long after she was forced to give up lacrosse and field hockey due to the intensity of her melanoma treatments, Claire continued to run. Be it on her school’s cross country team or as part of her determination to stay fit while fighting the “beast” – she would lace up her shoes, grab her head phones and head out the door, running to clear her mind and fill her heart. It was a bond she shared with her dad.

Rocky spent many years as a marathon runner – competing in the Baltimore Marathon numerous times as well as the Marine Corps Marathon. Claire was still in her stroller as Hillary and I pushed her along the running route to cheer him on! Although Rocky now cycles – case in point, his 630 mile Riding With Claire journey in 2015 – he was always hopeful that running was something he and Claire could do together in the years to come. Now they are, but it’s not quite as he imagined.

The Claire Marie Foundation is an official charity of the Baltimore Running Fest; one of the premiere running events on the East Coast! We are over the moon at the thought of incorporating Claire’s love of fitness with our campaign to raise awareness, clarity and hope in fighting adolescent and young adult melanoma. Rocky’s got his Relay Team set! 

Why don’t you join us! It’s October 21, 2017! Pick a race; 5K, Half Marathon, Marathon, Team Relay or even the Kid’s Run! We pay your registration fee and you help us raise funds to fight melanoma in young people. It’s that simple!

Just email us at [email protected] and we’ll get you signed right up! All you need to do is lace up your running shoes, get your friends to support your efforts, and have a blast while running to support our cause!!

To participate, each runner must raise the following minimum amount by October 5th, 2017.

Kids Fun Run: $100.00
5k – $250.00
Half Marathon – $350.00
Marathon – $500.00
Relay Team – $250.00 per runner / or $1,000.00 per team (heads-up: this event fills quickly!)

Are you inspired to raise more than the minimum dollars? Yes please! We’d love it! After all event expenses are covered, 100% of additional funds will support our mission to raise awareness, clarity, and hope in the fight against adolescent melanoma.

Each participant will receive a Claire Marie Foundation Team shirt, entry into a pre-event Team pasta dinner, and a chance at the following prizes:

• For the top Individual fundraiser (5k, Half Marathon or Full Marathon) – $1,000 travel voucher on Southwest Airlines.

• For the top Relay Team Fundraiser – $2,000 travel voucher on Southwest Airlines.

How amazing is that? Running to save young lives on a fabulous fall day! A terrific way to #LiveLifeLikeClaire!

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Why You Need a “Gold Standard” Dermatologist

Here’s a couple of facts you may not know:

Pediatricians and General Practitioners do not routinely study dermatology in their medical preparation. Surprise! Basically that means they are not trained to detect skin cancer and melanoma at it’s earliest point of origin. That is why it is essential to schedule an annual full body skin screening with a qualified dermatologist.

But before you book your neighbor’s favorite derm, listen to this: not all dermatologists are equally trained either. Some specialize more in the aesthetic and cosmetic care of the skin. Others  offer greater attention to the disease aspects of the skin. Then there are those who are equally balanced in both specialties.

It is up to you to ask a few questions and make sure you are scheduling an appointment with a dermatologist who meets the Gold Standard of skin screening. This is no time to be shy!

You should expect the following during a screening appointment:

  • The dermatologist will put you into a gown and do a full body check for moles and any lesions. That includes the feet, nails, head and genital areas.
  • Make sure the dermatologist uses dermatoscopy. It is a scoping technique that uses skin surface microscopy. It can also be called epiluminoscopy and epiluminescent microscopy. It allows the dermatologist to look into the layers, color patterns and changes deep within the mole, rather than just glancing at the surface.
  • If anything atypical is found, the dermatologist will determine if it should be removed for biopsy or if it should be watched. The appropriate time period for “watching” is three months.

Many dermatologists will photograph moles they want to keep an eye on to best detect any change. Still others may recommend “mole-mapping” technology in families at high risk for the disease. This involves full body photography, but is relatively new.

Listed below are the amazing ‘Gold Standard” dermatologists in Maryland who dedicate their time and expertise to the Claire Marie Free Screening Program and meet the highest standards of care.  All are listed in alphabetical order.  Many are part of the renown teams at Johns Hopkins Dermatology, Simmons-O’Brien & Orlinsky, Belcara Health,  Maryland Dermatology, Skin & Vein and University of Maryland Upper Chesapeake Hospital. 

  • Dr. Melanie Adams, M.D
  • Dr. Karen Beasley, M.D., F.A.A.D
  • Dr. Nicola Bravo, M.D.
  • Dr. Bernard Cohen, M.D. 
  • Dr. Sherry Cohen, M.D. 
  • Dr. Brian Connolly, M.D. 
  • Dr. Jennifer Cooper, M.D.
  • Dr. George Denny, M.D.
  • Dr. Meg Gerstenblith, M.D.
  • Dr. Anna Grossberg, M.D.
  • Dr. Christian Halvorsen, M.D.
  • Dr. Byron Ho, M.D.
  • Dr. Sarah Hsu, M.D.
  • Dr. Dennis Kurgansky, M.D.
  • Dr. Onah Lauring, M.D.
  • Dr. Mark Lowitt, M.D.
  • Dr. Ciro Martins, M.D.
  • Dr. Stanley Miller, M.D.
  • Dr. Diane Orlinsky, M.D.
  • Dr. Tola Oyesanya, M.D.
  • Dr. Kate Puttgen, M.D.
  • Dr. Saleh Rachidi, M.D.
  • Dr. Rachel Schleicher, M.D.
  • Dr. Amie Sessa, M.D.
  • Dr. Mary Sheu, M.D.
  • Dr. Eva Simmons – O’Brien, M.D., F.A.A.D
  • Dr. Saif Syed, M.D.
  • Dr. Zain Syed, M.D.
  • Dr. Samantha Vincent, M.D.
  • Dr. Vadim Villareol, M.D.
  • Dr. Margaret Weiss, M.D., F.A.A.D.
  • Dr. Robert Weiss, M.D., F.A.A.D.
  • Dr. Rena Zuo, M.D. 
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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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