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

Ten years ago this October 16th, 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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From Our “You Have GOT To Be Kidding Me!” File:

Okay people: What part of SUN DAMAGE CAUSES MELANOMA do you not understand? It seems we need to amp up our message!

In the last month there has been a number of articles revealing young people among Gen Z and Gen Alpha do not think they need sun protection and are in denial of the true melanoma risk they face from UV exposure. Even worse, they are buying into crazy false statements on Tik Tok that would be funny if not so incredibly dangerous!

An online survey of more than 1,000 people, the American Academy of Dermatology found 28 per cent of 18-26 year olds did not believe suntans could cause skin cancer. Another 37% said they would only wear sunscreen when others nagged them about it. 

A separate poll conducted by the Orlando Health Cancer Institute found 14% of adults under 35 years bought into the myth that wearing sunscreen daily does more harm to your skin than unprotected sun exposure. 

And the US Centers for Disease Control and Prevention found only 8% of men and 26% women younger than 30 say they always use sunscreen when outside in the sun for at least an hour. 

As for crazy town – here are some of the more insane Tik Tok comments made by untrained, idiotic influencers.  Let’s say this again – THEY HAVE NO IDEA WHAT THEY ARE TALKING ABOUT!

  • Sunscreen blocks vitamin D production.” ABSOLUTELY NOT!   Science proves otherwise. And, you only need 15 minutes a day in the sun to soak in all the Vitamin D you need. Bam!
  • “As long as you have a good tan you don’t need sunscreen.” WHAT??? A sun tan indicates your skin is already being damaged by the sun. Darker tones to your skin offer ABSOLUTELY NO PROTECTION.
  • “The more time you spend outside the less likely you are to get sunburned.” HELL NO! That just raises your risk! You can ONLY prevent sunburn through the use of sunscreen, the wearing of UPF 50 clothing and supplements such as Heliocare which help boost UV resistance. 

Social media platforms such as Tik Tok and Instagram are entertaining and can offer solid information from the right sources. But when it comes to your health – ignore influencers who are just trying to get clicks. They are dangerous. Listen to medical professionals – and get your skin screened every year – sooner if you see any sort of  change.

Take care of you. Take care of your skin. And Live Life Like Claire

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The Risks of Spray & Aerosol Sunscreens

Let’s face it; as essential as sunscreen is to our daily life, putting it on is an absolute pain in the #%&!!  Why not make it as easy as possible? That’s where spray or aerosol sunscreens come into play. A quick spray here; another hit there! It’s fast. It’s easy. It doesn’t get on your hands – what could be wrong with that?  Quite a bit to be honest!

First off, coverage of a spray is a fraction of a liquid sunscreen. Spray sunscreen is diluted by high levels of propellant in the canister. In short, on average, only half the bottle actually contains sunscreen! And because sprays tend to sit on the surface of the skin – if it doesn’t  blow off in the wind – the sunscreen isn’t absorbed into the epidermis; key to total protection. To actually get full SPF protection, you would need to saturate your skin and rub it in to get the full effect. Thus, you are back to the same process as liquid sunscreen. 

There are chemical risks from aerosol sunscreens as well.  The nature of the spray requires  chemical propellants such as propane, butane and hydrocarbon. Plus, unlike liquid sunscreen formulations, aerosol versions contain certain chemicals such as benzene, oxybenzone and parabens which can all be inhaled while applying.

Exploding sunscreen? Only in aerosol form! All those chemicals and alcohol can become flammable when exposed to excessive heat when stashed in your car, beach tote or sports bag. And, think twice before spraying near an open flame! Yikes!

Aerosols damage the environment! Aerosol sunscreens are not healthy for the ocean or reefs. Not only can the wind carry the chemical filled spray into the water, but it washes off your skin while swimming impacting you as well as the reef and marine life.

 

What should you do? Choose a liquid sunscreen, SPF 30 and apply liberally every two hours. Don’t like it on your hands? Then use a hand wipe to remove excess! And keep in mind there are good number of terrific sunscreens safe for our oceans. Here are just a few!  https://bit.ly/ClaireMarieFoundation

If you would like to learn more about the risks of aerosol sunscreens, just click here: https://bit.ly/3ziMi5G

Remember, take care of you. Take care of your skin, and #livelifelikeclaire

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Don’t Get Blindsided! Your Thyroid and Melanoma

It was the perfect storm. When Claire was diagnosed with cutaneous melanoma at the age of 14, it absolutely blindsided us. She wore sunscreen, never tanned and got annual skin screenings. What was missed was the risk associated with hypothyroidism; a condition that can occur as a result of puberty. Claire became fully symptomatic at the age of 14; a diagnosis coinciding with drastic and quick changes in a mole that had always been prettily sitting on her ankle. A research oncologist determined the two factors meshed to create her melanoma.  Yup. The perfect storm. With that, we first learned factors other than UV sun exposure can cause melanoma in young people and fueled what is now our mission at the Claire Marie Foundation. 

Let’s break it down further. People with hypothyroidism have unhealthy high levels of thyroid stimulation hormone or TSH. Some individuals can have moles or skin lesions with receptors to TSH. When those receptors bind with TSH,  it can result in stimulated melanoma cell development. In short, the higher the TSH level, the more “food” for melanoma growth.  Here is the research report from Dr. Julie Ellerhorst of MD Anderson Cancer Center who determined the link in Claire’s case, and other research through the National Institutes of Health https://bit.ly/46Oopighttps://bit.ly/3MjDy2K

Once we knew the catalyst in  Claire’s diagnosis, we closely monitored her TSH levels as part of her treatment plan, keeping her levels as low as possible through medication in addition to melanoma drug therapies. Every time her TSH level would start to rise, another mole would begin to change, become atypical and need to be removed. Frustrating? Absolutely.  But Claire accepted it as a manageable chronic condition. ” Everybody’s got something” she would say before running out the door. Little did we know. 

What does this mean to you? If you or a family member has hypothyroidism or have a history of melanoma, make sure you get a full body dermatoscope based skin screening – head to toe. Remember, melanoma can develop in areas of the body where the sun does not shine and can often be colorless! And of course, talk to your doctor.  Getting a reading on your thyroid is as easy as a blood test. 

Keep in mind that melanoma is more aggressive and invasive in adolescents and young adults and if related, can be further accelerated by TSH. Should anything look questionable, see your dermatologist right away.  If you follow our other articles, you will remember surges in testosterone and estrogen can also be contributing factors to the development of melanoma in young people along with genetic predisposition. Add to that the risk of UV sun damage and you can see the need for overall skin care. Don’t get blindsided. Take care of you and your skin. Remember; prevention is the cure when it comes to melanoma. #livelifelikeclaire

 

 

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A Young Melanoma Survivor’s Nightmare: Why It Often Comes Back

There is still more evidence proving the shadow of a melanoma diagnosis never really leaves a young person. The “Beast” can and does often rear its ugly head at least once more in a survivors lifetime.

Dermatologists at the University of Missouri – Kansas City School of Medicine, have just released a new study which finds patients who have survived cutaneous melanoma, especially those diagnosed in childhood, adolescent and young adulthood, are five times more likely to develop a secondary primary cancer. It is of special concern within the first year of diagnosis. 

The greatest risk is for infants; those diagnosed with melanoma before they enjoy their first  birthday cake.  The risk declines with maturity through adolescents and teens with the lowest risk among those diagnosed between the ages of 25 and 29.  However it’s important to note these survivors in young adulthood are the most susceptible to developing internal cancers.

One of the researchers, Dr. Yen Luu, M.D. says “while the incidence of primary cutaneous melanoma (CM) in children is declining and the five year survival rate is relatively high (87% – 95%), secondary cancers (SPC’s) occur in over 11% of cases, reducing overall survival outcomes.”

All this supports the need for regular follow-up, self checks and routine dermatological skin exams for melanoma survivors. At the Claire Marie Foundation we believe prevention is the cure. Educate yourself. Know your risks. Engage in sun safe practices and book annual full body skin screenings with a dermatologist. Remember, primary care physicians and pediatricians are not trained to detect melanoma and other skin cancers.  Take care of your skin. Take care of you and be aware. After all, awareness saves lives. 

You can read the full report here: https://bit.ly/45O4P4u

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Air Travel and Melanoma; Know Your Risk!

Summer is finally here and it’s time to pack the bags and take off to a new adventure!  There’s so much on our mind when it comes to airline travel these days with cancelled flights, delays or lost luggage we want to offer this reminder; don’t forget to apply sunscreen before you board!

Research in the Journal of American Medical Association https://bit.ly/3WYcbzD  found airline passengers as well as  flight crews are exposed to an extreme amount of damaging UV  while in the air.  In fact, it’s so intense the study found one hour in flight equals 20 minutes in a tanning booth. Keep in mind one visit to a tanning booth can increase your risk of developing melanoma by 75%.

The risk is not limited to those just in window seats as the rays flood the entire cabin. Obviously avoiding a window seat and or lowering the shade can help  reduce exposure but to be safe, apply sunscreen prior to your flight and reapply every two hours. Wearing UPF 50 clothing helps as well! And don’t forget the little ones! Window seats are the favorite for them! Keep the sunscreen handy and close the shade as soon as possible.

Most importantly, have a terrific trip! Stay safe! #livelifelikeclaire

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Enough Already! It Takes More Than Sunscreen to Beat Melanoma

As we wrap up melanoma awareness month this May with sunshine filled plans for the summer ahead, can we please, PLEASE stop with all the half truths and mis-information about the causes and prevention of melanoma?

Can we address how it’s NOT only due to UV exposure? How prevention requires much more than sunscreen? Can we please, PLEASE address its prevalence in adolescents and especially young adults? Can step beyond the obvious and dive into reality?

Perhaps it’s the journalist in me who believes in hard, cold facts.  Perhaps it’s my lot as a grieving, ticked-off parent and melanoma prevention advocate but I have had it!   Through social media, news coverage and advertising every May we are continually inundated with one prevention message; slather on the sunscreen and melanoma won’t find you. Actually, nothing is further from the truth! While exposure to the sun’s UVA/UVB rays is the MOST common cause of skin cancers and melanoma, it is NOT  the ONLY cause. 

Did you know genetics and hormonal changes related to hypothyroidism, pregnancy and puberty can prompt development of melanoma?  Should you draw the unlucky gene or hormonal card, all the sunscreen in the world won’t stop the beast; but routine skin screenings can. If a problematic mole is removed at the very earliest stages there is a 98% chance of surviving past five years. But as the Melanoma Research Alliance reports should the melanoma reach a higher stage and spread internally through the body, the five year survival rate drops to less than 25%

Last I checked, all humans have skin. I’d say that’s well worth 15 minutes in a paper gown.

The Skin Cancer Foundation reports skin cancer is the most common cancer worldwide. It is also one of the most treatable cancers if it is detected early.  So why is there such an orchestrated pushback against routine skin screenings in the United States whereas in countries such as Australia and New Zealand it is as routine as a dental appointment? 

Perhaps because in the U.S., melanoma is not given its due among serious cancers.

Consider recommendations from the U.S. Preventive Services Task Force which every Spring, releases a report on the effectiveness and need of skin screenings for melanoma and other skin cancers. It’s important to note, the USPSTF, according to their website, is a collection of “16 nationally recognized experts in prevention, evidence-based medicine, and primary care. Their fields of practice and expertise include behavioral health, family medicine, geriatrics, internal medicine, pediatrics, obstetrics and gynecology, and nursing.”  Note not one is a dermatologist. Not one. Additionally, physicians in primary care and these other specialties are not exposed to dermatology as part of routine medical training. Why does that matter? Because dermatologists are the only medical professionals trained in the early detection of melanoma and other skin cancers. 

Last month, the USPSTF reinforced its earlier statement from 2016 finding inconclusive evidence as to whether or not skin screenings for those “without signs or symptoms” are effective for reducing complications or death from skin cancers or melanoma in adolescents and adults. The report concluded it was a wash; screenings could work or they could not.  Without symptoms? Really? Let’s look at this a little closer. By the time those “signs or symptoms” are noticed by the naked eye of a patient, if even noticed at all, it most likely is a problem. Add to that a 3-4 month wait for an evaluation and biopsy and a patient could be looking at a full blown case of melanoma with risk of metastasis to other organs.  If the same mole is detected in a routine screening, by a dermatologist trained in dermoscopy, the changes could be detected at the very earliest stage when it is 98% treatable, long before it has spread into the body. Yes, the patient will have a biopsy scar, but most likely no additional surgeries, drug therapies or negative impact on their life.

Even more mind-blowing is that in 2022, the USPSTF found melanoma was “over-diagnosed”. Let’s think for just a moment about that statement. How is a cancer over-diagnosed? Either you’ve got it or you don’t! The argument in that report was primary care physicians found while more patients were being diagnosed with early stage melanoma through routine screenings, fewer were dying of the disease. And that’s a problem? Isn’t survival something to cheer about? Did the USPSTF apply the same argument to preventive colon cancer, breast cancer or prostate cancer screenings which are much more invasive and costly? Of course not! It supports routine screening for these cancers because without question early detection of polyps, atypical moles and tumors is essential to beating all cancers.

These statements from the USPSTF complicates an already muddled message in melanoma prevention and adds to a broken system which claims lives daily such as that of my 17 year old daughter Claire Wagonhurst.

Our Claire was a beautiful 14 year old athlete and artist just beginning high school when we noticed unusual changes to a mole. She was sun safe and had been screened six months earlier by a dermatologist, but this was something new.  Despite our urgency to have the changing mole removed we faced a three month wait with the promise that “kids don’t get melanoma”. Surprise! Yes they do! Because melanomas are more aggressive and invasive in young people, it had quickly surged to stage 3a at removal.  We were blindsided even more so when we learned Claire’s melanoma had nothing to do with the sun. 

Ultimately, Claire was diagnosed with adolescent melanoma. The short version is this; hormonal changes related to puberty caused her melanoma. The longer version; routine hormonal changes in puberty prompted the development of hypothyroidism in her body which produced excess levels of TSH hormone. Add to that she had an extreme TSH hormone receptor in a mole that had been on her ankle since birth. A research oncologist at MD Anderson found that in Claire’s case, the two components meshed to develop melanoma. Subsequently during the course of her diagnosis, every time her TSH levels became elevated, another mole would be found to be rapidly changing and need to be removed. The best preventive treatment;  routine screenings every 3 months to remove any atypical moles before melanoma could set in in addition to ongoing sun safe practices.  We just accepted it as a chronic condition of her life. Sadly, it became much, much more. 

While living a full teenaged existence, Claire waged a three year battle of surgeries, hospitalized drug therapies and recovery therapies against what turned out to be an ultimate death sentence. All her pain, anxiety and loss would have been negated had the mole simply been biopsied and removed months earlier as we requested. If the medical profession had been fully educated about melanoma in young people. If, If, If!  The system failed our darling daughter and she isn’t alone.

The Skin Cancer Foundation reports melanoma is the most common cancer in young adults under 30,  the most common cause of cancer death in young women 25-30 years and the second most common cancer in adolescents 13 to 19 years. 

Melanoma in young people is said to be at “epidemic” proportions with diagnosis up 253% in the last 40 years.  Additionally, young people do not get the more treatable basal cell or squamous cell skin cancers;  they only get the nasty, deadly variety; melanoma.

At the Claire Marie Foundation, we share awareness information, prevention education and host free skin screening events for adolescents in young adults in Maryland and South Carolina. Since 2016, we have screened 1,440 young people 13-29 years, finding 16% needed biopsy for suspicion of melanoma. In many cases, early stage melanomas were detected, zapped before further treatment was needed.  So please, do not tell me routine skin screenings do not save lives. I’ve witnessed the victories and I have suffered the loss.

So how about this? Instead of ignoring the need for screenings due to lack of access,  let’s fix our broken system.  We need general practitioners such as those in the  USPSTF to follow the lead of other nations by including dermatology in their training and become skilled in the screening process of dermascopy.  By joining dermatologists in this expertise entirely new pathways to screenings and early detection would be created. Getting a skin screening could become as easy as a visit to the dentist. Wouldn’t that be amazing?

  Remember, if you’ve got skin, you could get melanoma. Know all the facts and take every precaution. That life you save could be your own or someone you love. #livelifelikeclaire

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More Evidence of Why Melanoma Is of Special Risk to Young People

You’ve heard us share the statistics again and again; melanoma is one of the most common cancers in adolescents and young adults – or AYA’s as they are called. Now new research reinforces why early detection is more critical than ever.                                      

For any human, the key to beating melanoma is detection at the very earliest stage before it has spread. But researchers at the Keck School of Medicine at the University of Southern California determined it is especially crucial when it comes to AYA patients. When found early, adolescents and young adults have a much better chance of surviving melanoma than older adults. But when melanoma has advanced to stage IV, when it is metastatic and has spread through the body, young people have only a 20% chance of surviving melanoma; a much worse rate than adults over the age of 40.

The lead researcher on the project is Dr. Katherine Y. Wojcik. Since the majority of melanoma research is focused on those over the age of 65, Dr. Wojcik felt the need to dive into the realities of the adolescent and young adult populations. ( can we just say a huge THANK YOU for that?!) According to Wojcik, “Advanced melanoma has poor survival, particularly  in AYA’s , yet information on the contributing factors remains scarce, lacking the level of detail readily available for older adult patients”. 

An earlier study by Johns Hopkins researchers found that melanoma is more aggressive and more invasive in young people than older adults. http://bit.ly/37HGxyH

Considering both these studies, with increased rates of diagnosis, it reinforces our belief that prevention through routine skin screening, along with other prevention methods, is a much better solution.

“To improve AYA survival, early melanoma detection is critical, Dr. Wojcik says. “Greater awareness, suspicion and screening for AYA melanoma may disrupt delays in diagnosis and reduce the excess burden of mortality from stage IV melanoma in young people.” http://bit.ly/3XW25ys

We couldn’t agree more. That’s why at the Claire Marie Foundation we continue to shine a light on preventing melanoma in adolescents and young adults through awareness, education and prevention. We are especially proud of our free melanoma skin screening program which has found 16% of the nearly 1,400 young people screened by our dermatological partners, needed biopsy for suspicion of melanoma.  As we say – #preventionisthecure.

#adolescentmelanoma #youngadultmelanoma #sunsafe #skinlove #skinscreenings #cancerprevention #ayacancer #ayamelanoma

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Melanoma: Why The Department of Defense Thinks It’s Worth $40 Million in Fiscal 2022.

They put their lives at risk to defend our nation and trust the U.S. Government will provide for their health and well being along the way.  As we honor Veterans and those currently serving in our Military, let’s take a moment to consider an unexpected risk they did not sign up for; death from melanoma and other skin cancers. 

Melanoma diagnosis is on the rise both among veterans and in active duty service personnel. The numbers are especially high among young people currently serving in the Navy, Marines and Air Force. Those who serve as pilots have the highest rate of diagnosis. 

It’s such a problem that the U.S. Department of Defense has targeted and directed 40 million dollars to melanoma research for Fiscal Year 2022.  Why is military personnel, both past and present, at an accelerated for melanoma? Consider this:

Active military are exposed to extensive and dangerous levels of UV radiation while flying in the air, deployed on ships and assigned to remote harsh environments such as deserts. Sunscreen and UPF 50 clothing are not routinely available nor are annual skin screenings through trained dermatologists.  Add to that years in service, and it is no surprise that so much money needs to be poured into treating melanoma and other skin cancers among our military. 

Here’s a thought; wouldn’t melanoma prevention be a better solution; both in terms of life and economics?  After all, melanoma is one of the most preventable of cancers. 

Prevention is as simple as establishing sun safe education training, providing and distributing ample amounts of sunscreen, incorporating the use of UPF 50 materials in U.S. Military uniforms and off duty attire, and most importantly making routine dermatological skin screenings part of annual military health checks. 

The brave men and women defending our country have enough to worry about. Let’s take melanoma and skin cancers off their plate. 

Interested in learning more? Here’s some insight. 

https://www.skincancer.org/blog/skin-cancer-risk-military/

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Claire Marie Foundation Takes NYC!

 

Bright Lights! Big City! On August 17th, CMF lit up Times Square in New York City with plenty of Claire Coral! The Claire Marie Foundation was one of a handful of nonprofits featured in Times Square as part of  National NonProfit Day! Our :15 second commercial ran 100 times in 6 hours – with 1.5 million impressions and thousands of people reached! That doesn’t even count our social media impact!

 Raising awareness of adolescent and young adult melanoma with the knowledge it can be prevented is the heart of CMF’s mission. We can’t imagine a better way to do it! Co-Founder CEO and Claire’s Mom, Marianne Banister, was joined in the big reveal by Claire Marie Board Members, Jaqueline Smith and Julianne Kavoussi as well as Young Professional Ambassadors Sarah Emrich, Becky Kavoussi and Collegiate Ambassadors Molly Sharpe and Anna Sharpe.

The event was especially meaningful for Claire’s mom.  Claire would be SO excited!  She absolutely loved the energy and excitement of New York!  She had so many happy adventures while visiting the city with her sister Hillary and friends. We can only imagine how excited she would be to see the impact of her legacy in Times Square – spreading so much awareness  and hope in the fight against adolescent and young adult melanoma.”

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