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Claire Marie Foundation

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Claire Marie Foundation

Growing up in LA, Marianne Banister was a familiar face on daily on our local ABC news station. She was always reporting from a storm, a flood, a fire…some sort of disaster. When a friend suggested that I reach out to interview Marianne, who now lives in Baltimore, I was a bit intimidated. Marianne and her husband lost their 17-year-old daughter Claire to melanoma.

Their family was determined to fulfill  Claire’s vision to provide clarity and hope in the fight against adolescent and young adult melanoma through their work at the Claire Marie Foundation. They are on a mission to ensure awareness, education, and prevention of cancer that has increased 250% in the last forty years.

Charity Matters: Tell us a little about what THE Claire Marie Foundation does?

Marianne Banister Wagonhurst: When this happened to our family, to our daughter, Claire, we were blindsided. And because even the medical profession did not realize kids could get melanoma at this age. It looked different than adult melanoma and it was more aggressive and more invasive. according to pediatricians. Melanoma is the number two, cancer in adolescence from 10 to 19 and the number one cancer in young adults from 20 to 29. This cancer is the number one cause of cancer death and young women 25 to 30. In young people, this disease is more aggressive and invasive than in older people.

We’re the only nonprofit in the country that focuses on preventing melanoma specifically in adolescents and young adults. We are not trying to treat it and we’re not doing research to find an answer to find the new drug or the therapy. Please, I pray to God we find that tomorrow.  Nobody’s helping to prevent it and that’s our job.

CMF Five Year Retrospective 2019 from Claire Marie Foundation on Vimeo.

Charity Matters: Can you tell us what the risk factors of Melanoma are?

Marianne Banister Wagonhurst:  If you wear sunscreen if you wear up 50 SPF clothing if you don’t go to a tanning booth and if you advocate for yourself. That’s it, then you’re good. I want to add empower yourself to advocate and get at the front of it. Our whole goal is to get people in and connect them with a dermatologist. If you don’t already have a patient relationship with a dermatologist, it can take three to five months to get your first appointment. 

Charity Matters: Can you share some of Claire’s Journey?

Marianne Banister WagonhurstClaire got a routine skin exam at 13, it was November. We had them checked every year, no history in the family, just having lived in Southern California being a reporter being aware of it. We go back in June for her yearly exam and about a week before that the mole on her ankle that she was born with started to change. But it didn’t look like what we’re educated to look at for melanoma. It wasn’t thick, it wasn’t dark. The borders were not irregular, none of that it just looked a little dusty gray in color.

Claire kept it very quiet and to herself because she didn’t want to be put on a shelf with her friends. She didn’t want to have gossip and didn’t want to engage. Claire wanted to deal with it and went out and lived her life. We were very fortunate to live where we do, where we had renowned medical support 10 minutes away.

About her junior year when we thought we were well past it, her oncologist, Dr. Sharma asked her if she would mentor another young girl who had come in the month that Claire was diagnosed.  As we were discussing his request for her to help this other young person coming through it. She said, “Mom, why do you think this happened to us?”

I said, “Maybe being who you are because you’re so positive and energized. And being what I do professionally, you know, maybe we can do this together when you’re ready?” Claire said, “Yeah, when I’m a senior, then it won’t matter. And I can tell people, and I can advocate.”  She still was not quite there yet wanting to share her story. So we knew down the road, that’s what she would want to do. The bottom line is I just couldn’t sit here with this information and not warn other parents. If someone had raised the flag of awareness before us, then maybe she’d still be here.

Charity Matters: What was the moment you knew you needed to act and start Claire Marie Foundation?

Marianne Banister Wagonhurst:  We started with community support. We got launched in October 2014, it will be six years ago this month. Claire’s friends from her school wanted to help and do something.  One of her best buddies since childhood called me and said,” Hey, Miss Marion, do you have a logo?” And I was like, Why? I mean, we knew we were going to do something, but we are just trying to get through the grief and to deal with things.

Claire’s friends did this dance a THON and raised $24,000 called Moves for Claire. I didn’t know how many people my daughter knew. And then friends of other friends and her story carried. There were 500 kids there. And they had sponsorships, and I mean, they went all out. We realized they’re listening and paying attention now. So we need to take advantage of this. If we want to do this in her memory, we have to do it while they want to engage. And they have been our biggest force.

So through them, we then went forward, we have collegiate ambassadors, and they started the program for so they were in the high school class of 2015, college class of 2019. We’ve had just short of 100 kids on 46 campuses. And they do peer to peer education and mentoring and awareness programs.

My husband cycled 620 miles to symbolically take her to college. Claire was accepted to college just a couple of days before she passed. So she got accepted to Georgia, Southern University, Alabama. So he cycled from Charleston to Georgia Southern into Bama. We did this big media raising campaign and because it was a football game that she promised her dad he could go with her. So you know, it was a way of him to process it and honor her, but it was a way for us to raise awareness. We started doing that and running fast.

The kids came up with a lot of these ideas,  they’re all young adults now. We have partnerships since with US lacrosse and we work with the Melanoma Research Foundation, as one of their advocacy partners. We go to Capitol Hill and campaign for funding and support for research. We are developing a relationship and a partnership with Teen Cancer America out in LA. we want to bring our screening program out there, if a young person is going through cancer, guess what that puts you at elevated risk for melanoma.

Charity Matters: What are your biggest challenges?

Marianne Banister Wagonhurst: The biggest challenge for all this is that we’re the only ones out here doing it. We’ve screened 1000 young people, we found 16% have A typical moles that need a biopsy. Funding is still a big issue. We could use a staff of two full people, two full-time people. You know, it’s just me and my husband and the volunteers that pop in and out and help us out.

Secondly is getting our information out there. Awareness education, like this event we’re doing October 3rd, we always try to reach young people in the way that they’ll hear us.  It’s a two-hour Music Festival, with performers from LA Nashville, Baltimore, and Charleston. It’s really it’s a lot of fun. Then of course within that, we’ll have the melanoma prevention messaging built within it.

Charity Matters: What fuels you to keep doing this work?

Marianne Banister Wagonhurst:  Claire. There’s never anything that’s going to make it right that we lost her. There’s never any sense to it. But I truly believe this is her purpose. And if I don’t keep this foundation going and do the work that needs to be done, and I’m not fulfilling her purpose, and we would have lost her for no reason.

When people ask me how many children do you have, although it will be followed by an awkward moment. I just say well, I have two girls, one watches out for me from heaven and the other one is with me here.  I’m not going to say only have one daughter, that’s not going to happen because she existed and she had a purpose. She has changed lives and she has saved lives. We have had a number of young people who have found melanomas early and they always tell me,” You know, I thought of Claire, and I went and got it checked and it was a melanoma.”

Charity Matters: When do you know you have made a difference?

Marianne Banister Wagonhurst: My husband always says if we save one kid, we’ve done our work. And we’ve done that many times over. I think what I’m most proud of is we’re changing the narrative. We’re changing the focus, Claire was overlooked, she was a victim of the system. The system is not broken, but it needs to be tweaked.

Because of us, many organizations are now creating a Young Adult adolescent melanoma focus, in terms of research, and in terms of treatment and support. I know specifically within the melanoma world, we’ve changed that narrative. I think that is what I am most proud of in six years, we’re starting conversations, and making people understand that it’s just not a matter of putting on sunscreen, and calling it a day.  I think it’s changing the narrative of the conversation and elevating the importance and value that young people are getting this disease to the rate they are and that it is not rare.

Charity Matters: If you could dream any dream for your organization, what would that be?

Marianne Banister Wagonhurst:  The dream would be that every young person from two-years-old on should incorporate full-body dermoscopy-based skin screenings every year, as part of their WellCare. When they go to their pediatrician and their eye doctor and their dentist, they see the dermatologist, they get checked, that becomes part of their routine.

 We just don’t want anybody else to go through what we did, because it’s so darn preventable. When you think about it, melanoma is one of the cancers that you have the best odds of seen visually externally on your body. And a screening takes 10 minutes, and you don’t have to drink anything, and you don’t have to get an MRI and you don’t have to get a CAT scan, you just go in a robe, 10 minutes, a dermatologist with a scope. So we just need to it’s a system that’s broken, it needs to be readapted so that would be my dream.

Charity Matters: How has this journey changed you?

Marianne Banister Wagonhurst: I think one of the changes that surprised me is you get a different identity, you realize that life is you cannot go back to life as it was because it’s no longer there. So you have to recreate yourself. I’m in a different world.  So I’ve expanded the people in my life.

 I’ve had a lot of loss in my life and I’ve always lived my life as you have to thoroughly embrace it each day as it is. My faith is stronger than ever because I know she’s fine. I know she’s okay. I absolutely know because I’m telling you as smart as I like to think I am. I am not that brilliant.

This foundation has a life of its own. And as my older daughter says,” Claire will be done with it when she’s tired of Claire show.” Until then, it’ll just keep happening things that just drop in our lap. Opportunities that come up or people we meet that just really like jumpstart us into a new phase. And it’s just like, okay, she’s not done with the Claire show just yet. 

Charity Matters: What life lessons have you learned from this experience?

Marianne Banister Wagonhurst: We’ve been asked this by other parents often how we dealt with the grief. We just had to dig down to this just horrendous feeling and we had to feel but then able to come out the other side. And it seems like to me that at some point of grief you have to process this pain. I think for me because I always remembered that conversation we had about Claire helping others, I know she would be proud of this.  

It’s not that you ever want this to happen, but if it does, to know that something has been inspired by her in a positive way. That’s what we look at.  There was nothing she could have done to control this or affect it and so when that happens, it’s kind of like well, what do we do with this now? Our daughter is having a great impact because of what we’re doing and that’s the best we can do for those we love.

 

 

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