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The Ignored Risk: People of Color Do Get Melanoma

If you have skin – you are at risk for melanoma. That’s it. Plain and simple. EVERYONE – no matter age, gender or race can develop melanoma. It does not discriminate and it isn’t always about the sun. Melanoma can occur due to genetics and hormonal changes related to puberty and pregnancy – especially among adolescents and young adults where diagnosis is at “epidemic proportions”. 

Many people of color live under the false assumption that they cannot develop melanoma because higher levels of melanin in their skin offer immunity to damaging rays of the sun. Yes, there is less risk than those with  fair skin, but when melanoma does occur, it is usually late stage with a much worse prognosis. Consider this: on the average – only 65% of patients of color diagnosed with melanoma survive five years compared to 91% of white patients. Why? A clear lack of awareness, education and preventive care among patients and the medical profession. 

Acral Lentiginous Melanoma or ALM is is the most common form of melanoma in people with darker skin and those of Asian descent although it can develop in all skin colors. It is found on the sole of the foot, the palm of the hand or under the nails. It can develop from an existing mole or pop out of nowhere! Although the actual cause is not clear, ALM appears more related to genetics than sun exposure. It is the form of melanoma that famously claimed the life of reggae icon Bob Marley.

Death rates from ALM are higher than other forms of melanoma mostly because it is often overlooked due to a lack of awareness and education among the patients and physicians. So what can you do? Begin by taking care of yourself!

  • Wear SPF 30 or 50 sunscreen every dayno matter your skin color.  It’s a challenge to find  a sunscreen that blends well with darker skin. Sunscreens containing titanium dioxide and/or zinc oxide are the answer. Look for formulas that are micronized zinc preparations. They do especially well on darker skin tones by offering protection without a chalky look!
  • Get screened annually by a certified dermatologist! Make sure the examination includes an evaluation of your feet, hands and nails. Keep in mind general practitioners, internists, or pediatricians are not trained in dermatology and can overlook any suspicious moles. You need a dermatologist who utilizes dermatscopy. 
  • Wear UPF 50 clothing during extended time in the sun. There are so many wonderful sports and fashion looks out there; Sun50, Coolibar, Athleta, Columbia Sports, the list goes on and on. Think of it as shopping to stay healthy!
  • Check yourself out! Evaluate your own skin monthly and be sure to call a dermatologist if you see any unusual changes. Listen to the voice in your head. Your instincts usually are right!

Take charge of your skin and spread the word! Prevention is the cure when it comes to melanoma. Stay well. Stay safe. #livelifelikeclaire

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Adolescents, Young Adults, Cancer & Anxiety; Finding Control Amid COVID

 

April Moran, LCSW-C is a Cognitive Behavioral Therapist who specializes in the treatment of anxiety disorders in adolescents, adults and families. As a member of the Claire Marie Foundation Medical Advisory, she offers this insight for young cancer patients – and anyone seeking help in coping with the uncertainty that is COVD-19.

This week is Adolescent and Young Adult Cancer Awareness Week, yet this year the focus for any adolescent or young adult is different.  Their focus might be on how their treatment has been interrupted and or put on hold due to the COVID 19 crisis.  Expected anxiety about their cancer diagnosis has been replaced with anxiety about access to treatment.  The thing is, cancer doesn’t quiet down or go to sleep just because hospitals and treatment centers are either now a place of high risk for our youth or shut down all together.  It’s as if a banner saying “I’m living with uncertainty x10” is flying over them.  Read on to get some answers.

  • Look at your thoughts.  Finding a way to accept this current COVID situation and manage our feelings of powerlessness without falling into despair is of immediate importance right now.  We don’t get to choose what is happening, but we get to choose how we respond to it.  When we feel powerless, our power is always in how we respond.  This concept drew me to cognitive therapy as a young therapist.  Our thoughts directly create our emotions.  If you have the thought “this is awful, and I can’t handle it”, you will undoubtably feel anxious and afraid.  If you change your thought to “I’ve had lots of challenges before.  I don’t like this uncertainty, but I’m finding ways to handle it one day at a time”, you will feel less anxious and possibly hopeful.  As someone battling cancer, the feeling of hope is important to your physical and mental health.
  • Create Meaning and Practice Gratitude.  One of the ways we can choose to cope is to do things that create meaning.  Martin Seligman is a therapist I have long admired.  He talks about how when we pursue meaning (starting a peer support group) and connect (reaching out to other adolescents and young adults with cancer to check on them) we will experience positive emotion.  This is the control we do have.  As a therapist,  I often ask my young clients going through times where they experience high levels of powerlessness to practice gratitude.  This video by Dr. Sood best illustrates what I’m talking about.   https://www.youtube.com/watch?v=GZZ0zpUQhBQ
  • Do something you are good at.  Another important way to manage during this time and give you a sense of control is to do something you are good at once a day.  It could be anything from yoga to making others laugh.  You will feel a quick surge in your mood.
  • Set up “worry time”. Sometimes despite all efforts – worry and “what if” thoughts seep into our minds.  Sometimes it feels impossible not to worry.  Set up a “worry time” for about 15 minutes a day at the same time, every day.  This is called containment and will help you let go of your worry and stay more present in your day when it’s not “worry time”.  When worries inevitably come, acknowledge them, do your best to remind yourself about worry time and shift your attention to connecting with others, distracting yourself with a movie or doing anything that brings meaning.  This will help you stay more present and connected in the moment.  
  • Connect-even if you don’t feel like it Last but probably most important, try to virtually connect with others.  Group time is essential and helps everyone feel that connection to others – that need to be included.  Being “part of a tribe” goes back to early survival and not getting eaten by wildlife.  It was physically safe to be part of a tribe.  Evolution is slow and our brains still register physical danger even if the danger now is emotional.  Right now, with the need to isolate, we are having a very high stress response to being alone and apart from our tribe.  Teens and young adults with cancer need to create ways to connect more than ever.  

There will be a time when things return to “normal”.  Your treatment will get back on track and you will find new ways to adapt for now.  Having hope gives you the courage to survive.  Take this one moment at a time, one hour at a time, one day at a time.

For more information or to contact April Moran, explore her website

 

April Moran, LCSW-C

http://www.anxietycbt.com

 

 

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Taking 10 Minutes to Save Young Lives

What is 10 minutes worth to you? We’re talking about 600 seconds. That’s roughly the length of time it takes to get your latte from your favorite barista.  It’s probably the same amount of time it takes to peruse your social media feeds or to shop for a couple of items on Amazon. It’s also the length of time it takes to get a full body, dermascopy based skin screening.  10 minutes that could save your life. You’re worth it right?

Since 2016, the Claire Marie Foundation has offered free skin screenings to nearly 1000 young people in Maryland. Of those,  more than 14% have been found to have atypical moles that needed biospy for suspicion of melanoma.   In 2019, we were able to take our screenings on the road by teaming with our CMF Collegiate Ambassadors at the College of Charleston and  Germaine Dermatology  in Mount Pleasant South Carolina where 50% of those college students screened required biospy for suspicion of melanoma.  Yes,  early stage melanomas have been found – often in moles that looked perfectly normal to the naked eye.  Those patients will tell you it’s the best 10 minutes ever spent! 

Melanoma diagnosis has increased 253% in the last 40 years in young people where it can develop for reasons that often have nothing to do with the sun! Melanoma can be the result of genetic, hormonal or immune related conditions.  It is the second most common cancer in adolescents, the number one diagnosed cancer in young adults under 29 and top cause of cancer death in women 25-30.  The Claire Marie Foundation is leading the charge in developing  melanoma prevention programs for adolescents and young adults. In fact we are the only non-profit in the U.S.  to turn a spotlight exclusively on this age group!

Melanoma is one of the most preventable of cancers. All it takes is a new mindset and simple life style changes.  Pretty simple huh?  What goes on at a Claire Marie Free Screening? Just take a look!

 

When is the next CMF Free Skin Screening? So glad you asked!  We’re working on that right now!  Details and locations  will be announced  both here on clairemariefoundation.org and our social media sites.  Check back as the appointments go fast!

In the meantime, if you have any concerns, contact a dermatologist who uses dermascopy for routine screenings immediately. Wear SPF 30 – 50 daily and apply every two hours when out in the sun. Adding UPF 50 clothing is always a  great idea!  Take care of your skin. Take care of you.  Be aware. Because #awarenesssaveslifes  #livelifelikeclaire!

 

 

 

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All the Worlds a Stage for Edina Hiser; CMF’s First Arts & Design Scholar

The world is full of colorful, vibrant possibilities for Edina Hiser.  With the whirlwind of graduation behind her, the 2015 inaugural recipient of the Claire Marie Foundation Scholarship in Arts and Design has a degree from the University of Southern California School of Dramatic Arts in hand and a portfolio brimming with four years of theatrical work.  Los Angeles is now her home as she launches her career.  It is a long way from the halls of Notre Dame Preparatory School in Towson Maryland where this self described “art kid” immersed herself in art classes, the school’s annual fashion show and any other creative outlet available which would allow her to tell stories in visual ways. 

 

As a high school classmate and design collaborator of Claire Wagonhurst, Edina decided to use the scholarship award in her friend’s name to help offset the cost of college tuition at USC where she had chosen to major in Theatre Design with Costume and Scenic Design becoming  the two emphasis components for her major field of study. 

USC’s School of Dramatic Arts puts on an astounding twenty-two productions per year, which created the perfect environment for Edina to consistently express her many talents.  During her four years, Edina served as both Assistant and Lead Costume and Assistant and Lead Scenic Designer on an extremely impressive number of theatrical productions, including well-known shows like West Side Story, Twelfth Night, Cabaret, and Spring Awakening.rst

 

Now that this uber talented young lady has her USC undergraduate degree in hand, she is living in Los Angeles for the foreseeable future and is currently focusing on building her artistic network and reaching out to the many contacts she accumulated throughout her time in school. She recently worked on an Emmy event for STARZ, the premium cable and satellite television network, and got some on-set experience as a costumer for an independent feature film. 

As a young artist who possesses such an extensive array of talents, Edina presently finds it difficult to narrow down a singular goal or job, when asked about where she envisions herself in the coming five years. “I enjoy the thought of going down unexpected paths. I’d eventually love to work on a big feature film, but I realize that each step towards that is a goal in and of itself. I’d also be perfectly content to remain strictly working in the theatre environment.”

What she does know for certain is that she finds joy in all sorts of storytelling, a theme that weaves its way through all of her artistic endeavors. For anyone who might question why she’s willing to take a risk on a career in the arts, where success can seem so chancy and fleeting, she responds as the true artist that she is, “Doing this kind of work is hard, grueling actually. I’ve never seen people work harder than the ones I came to know and work with in the theatre over the past four years at USC. You absolutely need to have a passion for it. And I just can’t imagine myself doing anything else.”

She went on to explain, “As a person who has always been incredibly touched by the work of storytellers, I love the idea of being able to continue the tradition through my own unique lens.  People look to art for answers and it brings them so much joy and meaning in times of hardship. Being able to provide even a little piece of that is a dream of mine.” 

Edina has, and continues to, find inspiration for her creative work from the people she calls her mentors, both her theatre professors from USC, whom she admirably describes as gifted teaching and working professionals, and from her fellow graduates and those friends still studying at USC, many of whom she now considers to be her West Coast family. 

As for her special connection to the Claire Marie Foundation, Edina is so proud and grateful to have been the first beneficiary of their Arts and Design scholarship. 

“I have loved watching how the Wagonhurst family has grown this foundation over the past four years. To see their heartbreaking loss, evolve into an organization that is not only doing great work, but is so full of love and support for the entire Notre Dame Preparatory Class of 2015, and the school community, is just wonderful.” 

Edina feels that the foundation’s support of the arts is one of the best uses of Claire’s name and is perfectly fitting for her lasting legacy. Claire, just like Edina, loved color and texture, and knew that those elements could bring joy to people’s lives and make the world a better and brighter place. 

Keep your eye on Edina Hiser, who’s artistic storytelling may very well be coming soon to a theatre near you.

https://www.edinahiserdesigns.com/

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Bringing More Joy, Color and Beauty to the World Through Scholarship!

We just want to send a big shout-out to Margaret “Maggie” Franz who has been selected as the 2019 Recipient of the Claire Marie Scholarship in Arts & Design!  Maggie is off this fall to Savannah College of Arts and Design where she will immerse herself in fashion and costume design.

Every year since 2015, the award is given to a graduating senior from Claire’s alma mater, Notre Dame Preparatory School in Towson, Maryland to support the recipient’s desire to study the design arts in college. It was a dream of Claire’s to launch a career in interior design and we are thrilled to see other young women share the same passion and excitement. Each year, our winners are selected by an exquisite team of noted design professionals from across the country! They bring expertise in fashion, theatrical, animation, interiors, illustration and fine arts. Our thanks to our CMF Scholarship Committee; Katie Fico with Walt Disney Animation Studio, Los Angeles based Interior Designer Stacey Vuduris, Illustrator Inslee Haynes Fariss, Danielle DiFerdinando of Danielle Nicole Handbags and Jewelry, Theatrical Designer Timothy Swiss of Los Angeles and Maryland’s First Lady and MICA Educator Advocate, Mrs. Yumi Hogan.  We just loved celebrating with Maggie and her mom Kathy!

 

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US Lacrosse and Claire Marie Foundation Are Teaming Up

June 13, 2019

US Lacrosse has entered a new agreement with the Claire Marie Foundation to work together in reducing the diagnosis of melanoma among adolescents and young adults within the lacrosse community.

The two organizations will focus on providing greater awareness and education about the disease, as well as prevention programs. The Claire Marie Foundation is the only non-profit in the United States to focus exclusively on the prevention of melanoma in adolescents and young adults.

Melanoma is the second most common form of cancer in young people between the ages of 10-19, and the most common cancer for people between the ages 20-30, with outdoor athletes at an increased risk for skin cancer and melanoma due to extended sun exposure.

“We are pleased to be collaborating with the Claire Marie Foundation on this important health initiative that could potentially impact so many members of the lacrosse community,” said Bruce Griffin, director of the Center for Sport Science at US Lacrosse. “We think this is an important message to help further educate lacrosse players, coaches, officials and parents about the risks of extended sun exposure and taking the necessary precautions.”

“We are thrilled to have the strength of US Lacrosse behind us in our mission to prevent the development of melanoma in adolescents and young adults. As a lacrosse family, we know well the power of the US Lacrosse community and the commitment of this organization to the health and fitness of its members,” said Marianne Banister of the Claire Marie Foundation. “By working together, we can keep young athletes safe while playing in the sun and reduce the chance that they, like our Claire, will have to give up the sport they love to treat a melanoma diagnosis they don’t deserve.”

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We are teaming up with ISDIN

In conjunction with the Co-Founder of CMF’s Medical Advisory, Dr. Eva Simmons O’Brien M.D., FAAD, we are teaming up with ISDIN;  a company which shares our passion for stopping melanoma in young people while celebrating an active full lifestyle! 

ISDIN’s unique product Eryfotona Actinica not only offers SPF50+ protection but also repairs pre-exisiting cellular damage within the skin. Of course that means fewer wrinkles (we love that!) but more importantly it reduces the risk of melanoma developing from pre-existing damaged cells. Amazing! 

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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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