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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 are dermatologists and medical doctors who 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 Dermoscopy or 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 and Maryland Dermatology, Skin & Vein.

Dr. Karen Beasley
Dr. Bernard Cohen
Dr. Sherry Cohen
Dr. Brian Connolly
Dr. Meg Gerstenblith
Dr. Annie Grossberg
Dr. Christian Halvorsen
Dr. Sarah Hsu
Dr. Onah Lauring
Dr. Ciro Martins
Dr. Stanley Miller
Dr. Diane Orlinsky
Dr. Tola Oyesanya
Dr. Kate Puttgen
Dr. Rachel Schleicher
Dr. Mary Sheu
Dr. Eva Simmons – O’Brien
Dr. Saif Syed
Dr. Zain Syed
Dr. Vadim Villareol
Dr. Margaret Weiss
Dr. Robert Weiss
Dr. Rena Zuo

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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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Claire Marie Dance Challenge

Because at the Claire Marie Foundation we believe in honoring Claire’s sassy, fun and joyous spirit while raising awareness of adolescent melanoma, we were thrilled when Claire’s friends created and launched the Claire Marie Dance Challenge in honor of what would have been her 19th birthday in April!

From Lynchburg College Men’s Lacrosse to Delta Delta Delta sorority at the University of South Carolina onto Johns Hopkins Women’s Lacrosse and much more, there was a whole lot of dancing, shaking and celebrating going on at high schools and college campuses throughout the Mid-Atlantic and the South. In the end, the videos posted on youtube, garnered nearly five thousand views and helped spread awareness of adolescent melanoma to those affected the most! Thanks to all who joined in the campaign. If you feel inspired to join in the cause – the Claire Marie Dance Challenge is still open! Just follow the directions below! Let us see your moves!

#AwarenessSavesLives! #LiveLifeLikeClaire!

See some of the videos here 

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2nd Annual Claire Marie Foundation Scholarship Awarded

1The second annual Claire Marie Foundation Scholarship for Arts and Design was recently awarded to Meredith Egan, a 2016 graduating Senior of the Notre Dame Preparatory School in Towson, Maryland. Meredith will be attending Rollins College, in Winter Park, Florida to pursue a Bachelor of Fine Arts degree in Theater Design as well as Business Administration.

The Claire Marie Foundation Scholarship is awarded annually in the memory of Claire Marie Wagonhurst, an aspiring interior designer and member of the Notre Dame Prep Class of 2015 who passed away of adolescent melanoma at the age of 17. Applicants must be a graduating senior at Notre Dame Prep pursuing an academic and professional career in design arts.

An impressive panel of professional judges determined the winner of the $5,000 scholarship, including Model, Fashion and Life Style Expert Molly Sims, Los Angeles based Interior Designer Stacey Vuduris, Creator and Designer of Danielle Nicole handbags Danielle DiFerdinando,  Fashion Illustrator Inslee Haynes, Lighting and Set Designer, Tim Swiss of Los Angeles and Maryland’s First Lady Mrs. Yumi Hogan who is an accomplished artist and educator at MICA.

The Claire Marie Foundation was established in 2014 following the death of Claire Marie Wagonhurst, a sparkling 17 year old who lost a long battle with adolescent melanoma as a result of changes her body went through during puberty. The Claire Marie Foundation strives to raise awareness, clarity and hope in the fight against adolescent melanoma while celebrating the joy, color and beauty that Claire embraced every day.  The Foundation is led by Marianne Banister and her husband Rocky Wagonhurst, Claire’s parents.

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May- Melanoma Month

During this National Melanoma Month of May, you will hear many calls of awareness to prevent skin cancer and melanoma. The Claire Marie Foundation joins in that mission. But when Melanoma stands as the number one cause of death in women 25 to 30 and the number two cancer among adolescents, the time for talk is over.

“The future depends on what you do today.” ― Mahatma Gandhi

The Claire Marie Foundation  is proud to be the first in the nation to offer an afternoon of sun safety education and free head-to-toe dermatological screenings exclusively for young people 21 years and younger.  Dermatologist Dr Eva Simmons-O’Brien, pediatrician Dr. James Fragetta and Maryland Pediatrics Group rounded up a team of renown Maryland dermatologists who donated a Sunday to screen young people.  With the average wait for a dermatology appointment three to five months, our registration and wait-list for the April 24th event quickly filled.

The findings of our screening afternoon were astounding.

  • Atypical moles were found on 20% of the young people seen with biopsy recommended.
  • Some of the nevi were suspicious for melanoma both on clinical exam and with use of a dermoscopy.
  • Of those children with recommended biopsy, 25% had an immediate family member with a history of melanoma.
  • The young people screened were between the ages of 8 and 19 years old.
  • 74% of the young people screened were girls.

Statistically, it should be noted puberty can begin as early as 9 years old. 90% of the cases of adolescent melanoma develop in patients between the ages of 10 and 19 with 55% of the cases in girls and young women due to estrogen factors.

From the time our Claire was diagnosed we saw clearly that melanoma must be detected and removed the earliest possible moment.  We were blind-sided with the diagnosis because she followed all the rules; she wore sunscreen, never tanned and saw a dermatologist annually. What we didn’t know was melanoma can develop in young people due to genetics or hormonal changes during puberty. Despite early detected changes in her mole, we had to wait nearly three months for an appointment to get it removed. We were told “Relax. Kids don’t get melanoma.”  That is when we pledged to open the door to awareness, early detection and treatment.

At the Claire Marie Foundation, we are so proud to empower these families with the ability to detect and stop this disease. Remove the mole,  remove the risk.  If diagnosed with disease, these families can jump into a treatment plan at the earliest possible stage when skin cancers and even melanoma are highly treatable.

“The future depends on what you do today.” Yes it does. Wear sunscreen. Don’t tan. Invest in UPF 50 protective wear. Get screened. Take care of your skin, take care of you and become aware. After all, awareness saves lives.

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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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