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From Marianne Banister: our Claire Marie Co-Founder, CEO, and Claire’s Mom

We are now approaching our 12th Christmas without Claire. It never gets easier. 

Rarely do I reveal the work we do behind the scenes at the Claire Marie Foundation. We love to share all the fun stuff; the excitement of our programs and events on our social posts. But because this is an extremely challenging time for nonprofits everywhere, so I wanted to pull the curtain back a bit, in the hope you will better understand the mountains we must climb.

As you know, at the Claire Marie Foundation, our focus is on preventing melanoma in adolescents and young adults through education, awareness and advocacy. We do not spend our funds on research and treatment post-diagnosis; not because those are not important avenues to beating cancer, but because we discovered prevention is overlooked and the easiest solution. In short, if you can prevent a cancer before it develops – there is no need for treatment.

Having said that, when needed, we step up to join in the good fight for melanoma research funding and to gain access to trials and treatments for younger patients who are refused access or pushed aside.  The thought is – kids aren’t at significant a risk, so let’s focus on adults. 

True,  children, adolescents and young adults do not get cancer as often as our older population. But if you want to see the Mama Bear in me come out, just suggest melanoma is “rare” in young people. It is absolutely is not. In fact, national studies show diagnosis is at “epidemic” proportions in those under 30 years.  Plus, melanoma is more aggressive and invasive in young people so effective diagnosis and treatment is essential to survival.  To clarify; while the number of overall young patients is not as high as older adults, the risks are greater. And in the experience of anyone who has lost a child, the impact is unimaginable; to the parents, siblings and general community. It is a loss of hope and a future filled with endless possibilities.

This year, 2025, has left us all reeling with massive federal cuts to cancer research for the National Institutes of Health and the National Cancer Institute. Research grants have been terminated, clinical trials have slowed, and, in some cases, have been brought to a screeching halt. There have been staff layoffs, and long-term projects with new life-saving findings jeopardized, if not completely eliminated. As research is impacted, so too is funding that trickles down to advocacy organizations such as the Claire Marie Foundation. Prevention, research and treatment all work hand-in-hand. 

This past summer, as the Co-Founder and CEO of the Claire Marie Foundation, and what is called a “Melanoma Mom”,  I was asked to join a coalition of melanoma nonprofits in the fight to correct a ridiculous ruling by the FDA, which in essence signed a death warrant for those with late-stage metastatic melanoma.  To set the scene, think of the Peanuts cartoon where Lucy yanks the football away from Charlie Brown just as he’s about to victoriously kick it!  Dr. Vinay Prasad, an RFK Jr. appointee, was “Lucy”.

In a surprise, 11th-hour move, he blocked FDA approval of Replimune’s RP1 after it had checked each of the FDA’s required “boxes” in the drug trial process. RP1 has proven to be the Holy Grail of late-stage melanoma treatments for patients who typically have little chance of survival. His decision, with little explanation, blindsided researchers,  trial investigators, and patients who were thriving on the treatment. All this halted access to the therapy, which was saving lives. 

Given the massive public outcry and advocacy from the Claire Marie Foundation, along with melanoma powerhouses such as AIM at Melanoma, Melanoma Research Alliance, and Melanoma Research Foundation, I am happy to report that the FDA is now reconsidering the approval of RP1. If all goes well, by April of 2026, RP1 will be fully available to those who need it most, offering hope that they may reach a point in their lives where they can live fully with NED, “no evidence of disease”.

All I could offer in my role as CEO, and more importantly, as Claire’s mom, was some insight into the challenges she faced when fighting to get access to trials that could have saved her life.  It was a different battle in 2011 when very little was understood about adolescent melanoma, and it was nearly impossible for a person under 18 years of age to gain access to life-saving trials.  We are proud that, by sharing Claire’s story over the years, we have pried the door open – just a bit – to allow access to drug trials for those under 18. Still, one thing that hasn’t changed: treatment delays of hours, days, and weeks cost young lives. Patients and their families invest significant hope and financial resources in participating in a trial.  There better be a damn good reason to yank it all away. No one deserves to be Charlie Brown. Not my daughter. Not any other young person fighting the good fight. Below is the protest letter I sent to the FDA as part of this summer’s campaign. It is proof that, even though our world is chaotic and hope can sometimes dim, there is still great power in standing up, standing strong, joining forces, and speaking out for what is right. 

To: U.S. Food and Drug Administration

From: Marianne Banister Wagonhurst / Co-Founder / CEO / Claire Marie Foundation

August 1, 2025

This October 16th will mark 11 years since we watched our beautiful 17-year-old daughter Claire Wagonhurst succumb to the brutality of adolescent melanoma. No one could prepare us for the emotionally and mentally shattering effect of watching our child take her last breath, knowing it all could have been prevented had she been granted access to life-saving drug therapies.

An athlete, artist, and vibrant young woman, we could only watch as Claire withered away, becoming blind and immobile, a mere shell of herself. Claire would most likely be with us today had she been granted access to trials for one of two drugs, both of which have now become routine in melanoma care: Opdivo and Keytruda.  Despite campaigns on her behalf by her oncologist at Johns Hopkins and Senator Barbara Mikulski of Maryland, Claire was denied access because she was not yet 18. Her teenage body was mere months away from that of a “full adult” in trial terms, but the answer was still no.

Ironically, a few months later, after Claire’s melanoma had advanced to her brain with leptomeningeal disease, Keytruda was approved in July of 2014.  Claire was one of the first in the country to gain access to the drug; her age was no longer a factor. Our oncologist was excited, deeming Keytruda’s impact significant and even “miraculous”,  but it came too late. Too late. Too late. Much, much too late.  Claire passed three months later.

Our family established the Claire Marie Foundation in honor of Claire, with the mission of preventing melanoma in adolescents and young adults.  It is a population ignored and misunderstood by the medical community, even though melanoma is statistically at “epidemic proportions”.  Melanoma is the second most common cancer in adolescents. It is the number one cancer in young adults under 30. It is the most common cause of cancer death in young women aged 25-30. And, as in Claire’s case, it can be triggered by hormonal changes of puberty and even pregnancy. But what is essential to understand when it comes to the topic at hand of FDA drug approval is this: melanoma in young people is more aggressive and more invasive than in older adults, per a study by Johns Hopkins in 2014.  There is no time to waste.

Allow me to restate more clearly. Adolescents and young adults diagnosed with a Stage 3 or Stage 4 melanoma, cannot wait for the FDA to reboot.  Melanoma is an absolute beast in the young body. Replimune’s RP-1 may be the only thing to save them. By changing the rules at the 11th hour, by denying access to this life-saving drug which has been well proven to be safe and effective, the FDA may as well sign their death orders. It is simply an unconscionable and irresponsible act.

I offer a thought for consideration. In the English language, we have a word for someone who has lost a spouse: widow or widower. We have a word for someone who has lost their parents: an orphan. We do not have a word for someone who has lost a child or a sibling. Perhaps because we simply cannot wrap our minds around the concept. It’s too horrifying. Trust me. It is the most unfortunate of clubs. As a leader, may you make the wise decision to grant approval and thus save other young people, parents, siblings, and families from my fate.

Marianne Banister Wagonhurst

For anyone who knew Claire, it was well understood fashion was not a choice but an essential way of life. She would spend days sketching designs from casual to evening gowns.  She dove in headfirst into her school’s newly launched green fashion show (now held in her honor every February) to design dresses out of recycled materials such as newspapers, candy wrappers and Lilly Pulitzer shopping bags. Her friend Mary was always snagged as her favorite model!

She shadowed handbag designer Danielle Nicole in New York and attended a summer design seminar at Savannah College of Arts and Design. She happily styled friends for special occasions, either from her “collection” in her bedroom or stashed in the trunk of her little white Rav 4.  She adored the classics of Audrey Hepburn and Coco Chanel, adopting the attitude it took as long to pop-on something cute as it did to wear a pair of sweats. Claire believed by surrounding yourself in color, texture and creativity,  in your home or wardrobe,  any day could be made better and happier.  In short; we all can joy and adventure in the smallest of things. 

With that, perhaps you can understand why we were thrilled when Baltimore couture designer  Ella Pritsker offered to create a denim jacket to mark Claire’s 10th Angelversary!  We connected Ella with Claire’s friend, artist Katherine Boggs to create a special design, representing Claire’s joyful spirit. Katherine’s artistic inspirational vision with Ella’s exquisite design! It’s exactly what Claire would have loved and so exciting they came up with two separate jackets; the “Claire” with a distressed coral seashell and the “Claire Coral” with a watercolor rendition of a sunset.

Both are on  a classic, distressed, fitted denim jacket; unique in style with customized cuffs and collar.  Perfect for any mood or occasion!  Additionally, a portion of the proceeds will go to benefit the melanoma prevention programs of the Claire Marie Foundation! Yayyy! Celebrate Claire with us! To order your jacket today at http://www.ellapritsker.com Don’t forget to use promo code CLAIRE30 at checkout for 30% savings 

Cheers to many happy adventures in your Claire jacket!  #livelifelikeclaire

How can it be? Ten years without our Claire and yet, she is as close as a smile and those ever present coral sunsets that seem to pop up when we need them the most.  As much as Claire refused to be defined by melanoma in her life, it seems more important than ever to celebrate the young woman beyond the diagnosis. While we know she would embrace the mission of this foundation bearing her name, Claire was so much more; a unique spirit determined to live life to the fullest. She was extremely private, offering quiet strength wrapped in joy with high expectations  for the future, always undeterred.

How do I share all the magic that was Claire? It’s nearly impossible. 

Claire was simply someone you had to experience; the brightest of lights.  Hysterical with a dry wit and contagious belly laugh, she loved nothing more than to make fun of herself. Her years were short but her life was full. By 17, she parasailed, traveled through Europe and determined Charleston was her happy place. She shadowed a designer in New York and was accepted to  two of her favorite colleges the day before she passed. She knew all the best shopping areas in SoHo, enjoyed celebrity moments, danced in the rain at concerts. She broke curfew, was grounded, redeemed, and grounded again. She fell in love, played lacrosse, field hockey and cross country and competed in aerobics. She designed amazing dresses, had parties (and invited way too many people…she just couldn’t say no apparently). She challenged herself, had little patience for drama, and decided there was always something to smile about if you looked hard enough. She embraced all that was beautiful, intent on bringing joy, color, beauty and creativity to everyday life.

Posted in her room was a sign stating “ I have an irrational fear of wasting a good outfit on an insignificant day.”  Since she wasn’t about to give up looking good, Claire opted to avoid insignificant or mediocre days. 

At her passing, her classmates and friends shared with us stories of Claire. It was a “fly on the wall” view of our daughter;  the life she lived away from us. Ten years later, we have asked some of those closest to her to share their favorite memories and reflections. Hearing the stories creates a lovely image, impossible of course, but one which still makes this mother smile. If I close my eyes, I can just imagine Claire and her circle of friends; now grown women, all curled up on a sofa, wine glasses in hand, the air filled with loud, excited chatter sprinkled with  her contagious, melodious laughter as they recount their adventures:

STORIES

CASEY:

There’s something truly special about growing up with a close friend by your side. Through awkward phases, sleepovers, first dances, impossible math classes, high school parties, and everything in between, Claire and I always had each other’s backs. When I reflect on our friendship, my heart warms at the thought of us driving down York Road, stopping for milkshakes, blasting Miley Cyrus, and laughing uncontrollably. It wasn’t the big events that mattered most, but those smaller, in-between moments that defined our friendship.

We stayed up late, laughed until we cried, stressed over classes, talked about crushes, and leaned on each other to get through every phase of adolescence. Claire was the life of every party, and she brought out the silliest, most carefree version of me in high school. Our friendship has left a lasting imprint on who I am today—encouraging me to always be myself and to find humor even in stressful situations. That’s what Claire did best.

One moment that really stands out from my Junior year was when our group of friends went through a phase of eating lunch in the middle school gym. One day, Claire and I were sitting on the floor with our sandwiches when someone casually mentioned the math test happening in the next period. This was a complete surprise to both of us. Panicking, we quickly opened our books and frantically tried to cram whatever we could.

Fast forward to the test: everyone had already finished except for Claire and me. We kept exchanging nervous glances from across the room, fully aware that we hadn’t prepared nearly enough. With just a few minutes left, Claire suddenly stood up, and I thought, Great, now it’ll just be me scrambling to finish. But instead of turning in her test, she looked right at Mrs. Adolf our teacher and blurted, “We both have no idea how to finish this test.”

I couldn’t help but burst into laughter. It caught me off guard, but more than anything, I was relieved she said something. Mrs. Adolf stood up and, with surprising patience, guided us through the last problem. Whether we passed or failed is a bit of a blur, but what stuck with me was how Claire’s quick wit and humor made the whole ordeal so much easier.

DIANA:

As much as I try, I can’t remember exactly how or why our friendship started but I do know she was one of the most positive, fun-loving people I had and will ever meet. Claire was always the first one to voice her desire to do something outside of school whether it was grabbing a smoothing, going to a concert, or having a good old fashioned high school basement party. When it came to hanging out with Claire the events were never boring. I can still remember the one time I agreed to go ‘grab a smoothie’ after school. Little did I know that wasn’t the only thing we would be doing. After stopping by Smoothie King and picking up smoothies, Claire thought it would be fun to drive through the nearby all boys high school to see if we could see any cute boys walking around. To a normal human this wouldn’t sound very exciting but to a sophomore high school girls that go to an all-girls school this activity was groundbreaking. As we approached the high school, Claire decided we needed to roll down all the windows and blast music as it would get the boys attention and it would obviously make us look super cool. Driving through the high school, hitting speed bump after speed bump, Claire yelled through her car window to the poor boys just trying to get to class. As she yelled, we all ducked down because we were all a little cowardly for any boys to actually see us, but not Claire. With her smoothie in one hand and her steering wheel in another, her confident and vibrant self-yelled at all those boys and forced them to look at her. After the minute long drive through the campus, we skirted off onto the main road giggling all the way home and obviously picking out which guy was the cutest.  Her energy and fun spirit was palpable and you couldn’t help but feel the same way when you were around her. She brought me out of my shell a lot in high school and made me feel comfortable in my own skin and that is something I will always remember and cherish about her. 

KRISTEN: 

Claire and I were going to a high school party in the middle of winter and of course, she was driving in her white Rav4. All was great for a couple of hours until the parents came home and kicked everyone out. Instead of calling it a night, Claire and I decided to “camp” in her car. There we sat, bundled up and freezing,  blasting an entire Miley Cyrus album and Les Mis while others jumped in to join the car party. It is one of my favorite memories with her!

ALLY:

The memories I have with Claire I hold onto tightly. I remember exactly where we were on York Rd when she showed me how she could drive (hands-frees) with her knees. I remember us begging her sister Hillary to buy us body glitter for parties and school dances when we couldn’t drive yet. And when we spent hours trying to figure out how to make a skirt out of duct tape for Halloween… and the fact that “costume” was supposed to be a Victoria Secret Angel.

MADISON:

I’ve never been a great runner, but Claire made cross country so much more enjoyable. Whether she stayed back with me at my slow pace or encouraged me to go faster, those two hours after school every day were always filled with laughter and great conversations. I’ll never forget one Friday  after practice we had a concert at Merriweather Post Pavilion, and I had nothing to wear. Midway through  practice Claire did the Lords work; she decided we needed to cut practice early that day, head to the mall and find me the perfect outfit to wear. She helped me look great that night!

Another personal favorite was her Christmas party.Claire  LOVED a good themed party.  Cue all of us in sweaters, stripped knee high socks and antlers in the Wagonhurst basement with boys nearly knocking down the back door to get in.

REFLECTIONS

DIANA: 

I spent the next years of my life always thinking of Claire. I think since her death happened when I was so young I never really learned from her story and applied what I learned from her to my life until I was a bit older. Come 2020 I was at a bit of a cross roads. I had just graduated college, was a new graduate ER nurse during the pandemic. While so much was happening at this time in my life I never really felt happy. I felt like I was missing out on something. I realized I wanted more for myself and if I wasn’t happy then why not make a change. During that moment Claire is the first person that came to my mind. I thought of her strength and her love for life and how she always just did what she wanted to do even up until the very end. Having her strength behind me I decided to make a change. I moved to Phoenix, Arizona. I knew absolutely no one there and I have no idea what was pulling me there but something in me knew that was exactly what I was supposed to do. It was beyond terrifying. Every time I felt scared or alone I went for a drive. During those drives I don’t think I’ve ever seen more coral skies in my entire life. Those coral Arizona sunsets were a hug from Claire. It’s like I could feel her with me telling me I was exactly where I was supposed to be. With her by my side I continued to travel. I went to Long Beach, California and every time I was stressed or contemplating the decision I had made I went for a walk or a drive and every time the skies were lit with coral. While I will never be able to give life back to Claire I really do believe I am living the life she would have wanted for me. Now with her behind me I feel like I can do anything I set my mind to. She is beyond inspirational to me even to this day and I don’t see that ever changing. I just know wherever life takes me next, as long as I see those coral skies I will know she is with me and I am exactly where I am supposed to be. 

MADISON:

Dear Claire, 

As I reflect on the past ten years, your impact on my life remains profound. Your kindness, laughter, and spirit taught me the true meaning of friendship and the importance of living life to the fullest. Your passion and dedication inspire me daily in my career and personal life- you are one of the people who inspired me to get into nursing to care for people. Though you’re gone, I feel your presence guiding me, reminding me to be compassionate and cherish every moment. I strive to honor your memory in all I do, knowing your influence has shaped the person I am today. I miss you dearly and carry you with me always.

With love, Madison 

KRISTEN:

One thing I’ve realized over the last ten years is that having a friend like Claire is truly one in a million. When I think back on our friendship, I can’t help but smile, quickly followed by a sense of gratitude for getting the chance to experience a once in a lifetime connection.

Over the years, I’ve met many great people and amazing friends, but I’ve never had another friend like Claire. When I say she is a one-in-a-million type of friend, I mean it. Claire would drop anything to be there for her friends and would always say “yes” to any plan before knowing the details, simply because she wanted to support them and have fun together. Wherever she went and with whomever she met, Claire exuded a love for life and an ability to find joy in every situation, all while dealing with her own battles.

She showed me what a true friend should be—someone who genuinely wanted to be there for the people she loved, spending hours listening and providing advice.  I have always strived to embody that quality because of how much it meant when she showed up for me.

These are just a few of the many traits I admire about her. While it hasn’t always come naturally to me to be spontaneous and remain optimistic, I choose every day to try to emulate her positivity, knowing Claire has undoubtedly changed my perspective on life.

Because of Claire, I will always try to say “yes” to new experiences, drop anything to support a friend, and look for fun in every situation, even when it seems impossible. I know that for the rest of my life, I will continue to share Claire’s story, telling new friends and people I meet what kind of person she was and how lucky I was to know her. I have seen firsthand how sharing Claire’s life has inspired complete strangers and saved countless others.

I feel Claire’s presence in so many things I do, whether it’s taking a drive while blasting my favorite music or going out of my way to see a friend at a coffee shop, treating myself to a pastry from the display window. Many people go their entire lives without having a friend so selfless and loyal, and I feel so blessed that I was lucky enough to have all of that with Claire.

In the last decade, I’ve found comfort in recalling the countless memories I have with Claire—replaying our conversations and sometimes even dreaming about sitting in her RAV4, catching up after all these years. In these dreams, we share updates on our lives and reminisce about high school music, boys, and parties. I always wake up feeling a sense of peace, as if I’ve just caught up with a friend who moved away, and we need to share months of news, both good and bad. I look forward to having these dreams and hope to continue experiencing them for a long time to come.

All my love

Kristen ❤️

NINA:

ALLY:

When I think about Claire I can still hear her voice, picture her mannerisms, her tone when she was saying something sarcastically, or the dead giveaways when she was telling a white lie. She was someone you could talk to about everything and nothing at the same time. She never got tired of talking. I remember going off to college and missing that. But most importantly, I remember how she made me feel. 

I think about her a lot. I think if she were here today we would be doing lots of traveling. I know she would have hopped on the first flight to visit me in Australia when I moved here. Claire was always up for an adventure. I think about the career she would have chosen and which city she would live in. She always had a soft spot for the south and sunny weather and she was passionate about fashion, but I could also see her living in NYC working in PR or media. It’s bittersweet to think about, but I know that wherever she would have ended up she would be doing big things. 

I think about making her proud, knowing that whatever I am facing, she would be rooting for me and telling me to go for it; even if “it”  might be a bit delusional. It’s hard to believe that she’s been gone longer than I knew her. But the impact she made on my life and the way she made me feel is something I could never forget.