February 26, 2019

The Grand Canyon Uranium Exposure Scare: Reaction & Reporting Fears from a Park Visitor Who’s…

By Shelley Nolden, GRYT Chairwoman

Last summer, I visited the Grand Canyon with my family. It was the trip of a lifetime. The sheer magnitude of the canyon, and the power of time that created it, stole my breath and seemingly never returned it. But what amazed me most during that trip were the galaxies, Jupiter’s moons, and nebulas I saw through the telescopes of the gracious astronomers who’d gathered to share their passion with the public at the Grand Canyon Star Party. At the time, I’d thanked my lucky stars that our trip had coincided with this event, held June 9 through June 16, 2018. –Two days before the uranium ore discovered in the Grand Canyon National Park’s museum collectibles building reportedly had been removed.

The Grand Canyon Uranium Exposure Event: Breaking News Reaction

Fast forward to Wednesday, February 20, 2019: I received an urgent-sounding call from my mother, who asked me the dates of my family’s trip last summer, as well as if I’d visited a museum. In the midst of an intensive project at work, my brief answer included a reference to the Star Party timing and spending time at a visitor center — not a museum. Then, I’d returned my attention to my job.

That evening, my husband told me about the breaking news that buckets of uranium had been found at the Grand Canyon Museum Collection storage and research facility in Grand Canyon Village. Frantically, I googled and found mainstream media articles describing three five-gallon buckets of uranium that had been stored in a taxidermy room where park employees worked and groups of children attended thirty-minute presentations. From this initial research of these breaking news stories of the uranium exposure, I learned that the amount of uranium present posed a health risk to nearby adults after just thirty seconds, and for children, safe levels were exceeded after a mere three seconds.

Cancer Anxiety the Size of the Grand Canyon

As the pit in my stomach widened into a canyon, and the urge to vomit rose in my throat, I felt panicked on behalf of the museum staff and the thousands of visitors over almost twenty years, as reported in those articles, who’d been exposed to vast amounts of unsafe radiation. And on behalf of my own two children, nephew, extended family, and myself.

While we had not visited the museum collection building, we certainly had been in the vicinity. In total, we’d spent a full day at the Grand Canyon Visitor Center, Mather Point, and the trail edging the south rim that leads to Yavapai Point.

With cancer fears thrumming through my veins, I immediately pulled up my navigation app to determine just how close to the radioactive material we’d been. About two miles, maybe a little less. Also, I didn’t have a sense for where we’d traveled on horseback from the Apache Stables. Too afraid of what I would learn, I did no further research on the topic at that time.

The possible side effects from radiation are terrifying.

For me, the threat of cancer is a tangible fear.

At age 31, I was diagnosed with acute promyelocytic leukemia, days after losing the baby girl with whom I’d been pregnant. I spent the next forty days hospitalized, with a portion of that time in the Intensive Care Unit. Eight years later, I am in complete remission, but I still have PTSD.

And anxiety that when provoked can be debilitating.

Although radiation wasn’t included in my treatment plan, I had numerous CT scans. And, somehow, the possibility of a secondary cancer from that radiation exposure has come to be a trigger for my PTSD. To me, it represents all my fears and frustrations related to everything that happened to my body, and the associated feeling of lack of control over it all. To this day, I still feel anxious going through airport security scanners and flying.

So, for someone afraid of receiving even an X-ray, you can imagine how I interpreted those initial mainstream media sound bites. Not only did I feel sick for those who’d been in the building, but I worried that my family, including young children, and I had been too close. That first night, I slept maybe two hours. And, for the four days that followed, thoughts of the Grand Canyon and uranium invaded my life (and happiness) at least once every fifteen minutes. In short, I was freaked out, as well as furious that someone’s carelessness could harm so many people.

Then, on the fifth day, I decided that I couldn’t continue like this: I needed to dig back in to determine the extent of the risk, even if the answer made it impossible for me to convince myself that everyone would be okay.

The Need For Authenticity in Journalism For The Greater Human Good

Along with my husband, who knows all about my issue with anxiety, I re-consulted Google. Quickly, we learned that the uranium was actually “uranium ore,” which is far less radioactive than pure uranium, and that some of the initial news coverage had “misreported the amount of radiation exposure rates as milliR/hr instead of microR/hr, resulting in an overstatement of radiation exposure by a factor of 1000,” as described by Owen Hoffman in a comment to the National Parks Traveler article, “Investigation Launched Into Buckets of Uranium Rock Samples at Grand Canyon National Park.”

The more we looked, the more we found from the scientific community that downplayed the risk. While there is certainly a concern, meriting an investigation that will result in a report stating risk levels for those in close proximity to the uranium ore, it appears that the mainstream media initially over-hyped the news.

Here are some helpful links for anyone who’s visited the Grand Canyon and is now concerned:

Grand Canyon National Park Museum Collection FAQ

Knox News: “Buckets of Uranium at the Grand Canyon? Don’t Worry, Oak Ridge Experts Say”

Cronkite News: “Scientists Downplay Radiation Threat from Uranium Ore Stored at the Grand Canyon”

The Guardian: “Grand Canyon Tourists Possibly Exposed to Radiation at Museum, Whistleblower Says”

These articles were posted the day after the initial news broke. If I’d read them then, I would have saved myself a lot of worry. But, I didn’t. I’m an imperfect human, who knows firsthand the burn of chemotherapy as it courses through the bloodstream.

It is clear that the buckets of uranium ore in the museum collection building were mishandled, and that an investigation is warranted. (I pray to God that the findings will show that those who were in close proximity did not receive unsafe levels of radiation exposure.)

It is also clear to me that the initial alarming headlines and misreports of the radiation exposure rate represented irresponsible reporting. Of course, I have no way of knowing how many of the thousands who have visited the museum collection building and the tens of millions who’ve visited the Grand Canyon over the past two decades panicked as I did when first hearing the news. But I am certain that I wasn’t alone in my fear.

Cancer Anxiety: Help Through Community

Through my experience as the Chairwoman of GRYT Health, I know that anxiety is a very real issue for many cancer survivors. In the GRYT App, an online support community for cancer survivors and caregivers, our most heavily attended live AppChat was about managing anxiety.

The people who’ve visited the Grand Canyon, and specifically the museum collection building are just that — real people, with families and vulnerabilities. I hope that this incident serves as a reminder to the journalism community that while alarming headlines certainly do grab attention, they can also be damaging when the facts behind them aren’t thoroughly vetted.

Later this spring, the precise facts in the case of the uranium ore at the Grand Canyon will come to light. At that time, if there is any evidence that people have been in harm’s way, I hope that the media treats the breaking story with the compassion those affected deserve.

And, for anyone who suffers anxiety from a cancer-related experience, know that you are welcome in our community on the GRYT App. My fears usually aren’t rational — though sometimes they are; secondary cancers are real, chemobrain is a thing and a relapse could happen. I also know that the people on the app know exactly what it’s like to experience these same thoughts. They are an incredible, compassionate, judgment-free support system to fall back on. You can find me there, chatting with others; reiterating I get it, here’s what helped me.

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January 7, 2019

New Year, New Paint, Same Award Winning App

By Aerial Donovan, GRYT Program Director

The saying, New year, New Me has been everywhere lately, whether on social media, news stories, or even Hulu! And we’re putting our own spin on it. New year, old app, new name. We’ve had a facelift (with the help of some really bright, bold colors)! Same app. New name. Our name. GRYT.

GRYT?? That’s… an unusual name. What’s it mean?

Grit is a character trait that so many facing cancer or other chronic diseases have no choice but to embody. It can be hard to maintain grit alone. That’s why there is no “I” in our version of GRYT. We work together, building relationships that fuel users to maintain their grit and to make choices that are right for them.

It’s also the same team comprised of cancer survivors and caregivers running things behind the curtain before we decided to get colorful with our logo. Which means, we’ve been there and we’re dedicated to making sure that information is not a luxury, but an undeniable right.

Our team and the GRYT community are authentic and relentless, and together, we are working to make sure no one ever has to suffer this journey alone.

Cool! So what does this mean for me?

The GRYT community will always promote a culture of inclusion and equality, where everyone is respected for the experience they bring, where authenticity and openness are revered, and where our collective voice and choice matter.

Just like before, we’re still a completely free app, available to download for iOS and Android. Anyone is welcome to download it, whether you’re a friend, family member, survivor, patient, caregiver, medical professional. Cancer affects so many people, and no matter your role, you can find a place on the app to connect with others.

Unlike other apps, which are largely funded by venture capital firms in the U.S. and China that sell patient data to pharmaceutical companies, GRYT is the first social community that is funded, built, and run by patients and caregivers. Users communicate anonymously in real-time and each person is 100% in charge of what happens with their data.

We follow industry standards and best practices in data privacy and protection and our database cannot be accessed directly from the Internet. Not sure what that means? Check out this blog post from our Chairwoman, Shelley. She’s trying to schluff off a few holiday pounds and realized how tricky privacy policies are among health apps, which is why we’ve made ours really easy to understand. Easier than losing five pounds, anyway.

What’s next?

We’ve got some exciting things in the works. You won’t want to miss it. Keep an eye on your inbox for upcoming announcements.

In the meantime, you can keep up with what’s on the calendar for events happening in the GRYT app. I invite you to check out the many programs that all take place in house on the app. Whether it’s contributing a piece for writing group or chatting in movie club, or maybe it’s timidly joining New User Night, any user is welcome to attend. AppChats are a great way to enter a general conversation as a stranger, seeking more information and leaving with some new friends and a community that understands. Plus, you’ll get to hang out with me, Aerial, GRYT Program Director.

Until then, I’ll see you on the GRYT app! You can find us in that tiny square on your phone. We’re the ones with the really bright and loud splash of color. Kinda like our community. And we wouldn’t have it any other way.

If you’re feeling curious, our website got a fresh coat of paint too. So, while you’re there, feel free to poke around.

Because who doesn’t love a fresh coat of paint?

Like what you’re reading? Follow GRYT Health on Facebook, Instagram, & Twitter for more inspiring news and stories! Questions? Reach out to contact@grythealth.com and someone from our team will be on it!

January 3, 2019

The Weighty Issue of Data Ownership, and Why GRYT Health Keeps Your Data in Your Control

By: Shelley Nolden, GRYT Health Chairwoman, Acute Promyelocytic Leukemia Survivor.

After a festive holiday season, I’m afraid to step onto my new digital scale. But not because of the five pounds of Christmas cheer I now need to lose. Rather, it’s the health app I have to download in order to use the scale’s high-tech features that’s giving me pause. Because once I enter my info and sync the scale to the app, I no longer own my weight loss progress, Body Mass Index (BMI), or bone density.

In order to use the app, I have to agree to a Privacy Policy, stating that the company: “…may share non-identified and aggregated Health data with partners or the public. Data will always be disclosed in a way that it cannot be tied to a particular individual. We may share such data to professional partners such as hospitals, researchers or other companies, as well as to the public in blog posts and data studies.”

Without consenting to these terms, I cannot access ANY of the digital features that merited the scale’s $100+ price tag. And, by agreeing to these terms, I will have effectively paid the company to disseminate and re-sell my health data. If my resolve weakens, and I eat nothing but cheeseburgers and milkshakes for the next month, who-knows-what institutions may receive the data associated with my weight loss failure.

How many health/social media apps out there are “scraping” your health data and reselling it? Do you read the Privacy Policies before you sync these apps with your personal life?

Before I became Chairwoman of GRYT Health, I probably wouldn’t have stopped to read the fine print. But, through the continual reaffirmation of our company’s values and GRYT’s leadership role in the patient experience research field, I have gained a far greater understanding of what actually happens when you enter your personal information into your phone. And, what should happen.

As a cancer survivor, I know what it feels like to not be in control. Not in control of treatment decisions, of the way your body feels, of your odds of survival, of the cancerous cells you long to gouge free from your body. Everything seems like it’s happening to you, not by you. It sucks. Plain and simple, it sucks.

Through the GRYT App, GRYT Health has created an online, private support community, offering both educational programming and peer-to-peer connections. It’s a free resource for all those affected by cancer, and it DOES NOT come with the price tag of being coerced into giving away the right to your health data.

We view every person who downloads the GRYT App as a HUMAN, not an anonymized source of data. We do not “scrape” medical information; we do not “use” our community; rather, we show compassion and respect for every individual who comes to our platform.

And, through our research initiatives, we empower our community to have your voices heard on your terms. Pharmaceutical and other health companies need to better understand the patient experience in order to improve it. And, patients should have the ability to play a bigger role in the search for cures that will benefit us all. At GRYT Health, we bring the patient/caregiver voice to the companies that make their cancer treatments through completely voluntary participation in surveys and focus groups, compensating participants whenever possible. Additionally, the members of our app community receive advance invitations to participate in our research projects before we reach out to the broader cancer community.

Our goal is to put control back in the hands of those affected by cancer. And so GRYT’s promise to you is that we will never use or sell your data without your permission.

We encourage you to read our Privacy Policy, as well as those of any other health apps you use or come across.

The GRYT App, funded, built, and run by a team of patients and caregivers, is a free resource for those who need support — free of charge and free of coercion regarding the ownership of your health data.

If only the app associated with my digital scale were the same. We welcome you to interact with our app community freely, with the confidence that comes with knowing there’s no Big Brother recording your info and selling it to a third party.

You’ll find me there in the chatrooms. Feel free to ask me how I’m progressing with losing those five holiday pounds. Because when it’s on my terms, I’m happy to share.

Like what you’re reading? Follow GRYT Health on Facebook, Instagram, & Twitter for more inspiring news and stories!

December 13, 2018

Announcing The GRYT Writing Group

In collaboration with A Ballsy Sense of Tumor and Lacuna Loft

At the end of last year, Justin, founder of ABSOT, teacher by day, writer by night, began hosting our year long How to Tell Your Story AppChat. Once a month, he would go through a host of different techniques, themes, and recommended guidelines. The GRYT community graciously listened, participated and brainstormed together. Then another month would past and the cycle of learning the how tos would refresh. It was an amazing series, and our first real AppChat that we debuted. The shame of it was, not a whole lot of writing was ever done, which was purely unintentional.

There have been many studies exploring how helpful and wonderful writing can be. Psychology Today, states:

“Across many experiments, people experience a positive effect from employing expressive writing to cope with difficult life experiences. Even though a traumatic or grievous experience comes crashing into one’s life unbidden, through writing, one can shape and explore the difficulty. Writing takes time. Taking time to write of one’s own life experience provides a way to respect, hone and understand the trauma or loss. We dignify our lives by taking seriously, in writing, the unwanted experience. We can make meaning of tragedy. Simply writing emotively, without telling a story, is not effective. Creating a narrative helps one write with authority in the face of unwanted change.”¹

So we brainstormed on how we could get more people involved, get more writing done, and how to help guide our community members in this new endeavor. It only made sense to transition How to Tell Your Story into a writing group. With the help our our nonprofit partner, Lacuna Loft, (check out their amazing writing program, Unspoken Ink), our awesome moderator, Justin, and Gryt’s platform, we know the only limits the GRYT Writing Group has is ones participants choose to enable.

The Deets.

Enter the start of a new year, new page, new chatroom. Beginning January 4th, on the Stupid Cancer app, among the various chatrooms you will be able to find a sparkling new one, the GRYT Writing Group Chatroom.

Once a week, on Friday mornings, in the chatroom, you will find a new writing prompt. In collaboration,with Lacuna Loft and A Ballsy Sense of Tumor, along with GRYT Health, there will be a rotating authorship of writing prompts. Each week is guaranteed to be different.

Read the prompt, ponder on it, then leave your paragraph, or two, or five- whatever your heart desires, in the chatroom to share it among your fellow community members. We’ve laid down the foundation for a safe, inclusive environment. All that’s left for you to do is to get your creative process on!

Not sure where to start? Feeling intimidated by the blinking cursor on your screen? Starting on the third Thursday of every month, join Justin for a new AppChat, GRYT Writing Night. You can chat with others, brainstorm, and get the creative juices flowing for that week’s writing prompt. Can’t make it? The writing prompt from the AppChat the night before will be posted in the GRYT Writing Group Chatroom the next morning.

GRYT Writing Group Guidelines:

  • Anyone that is part of the GRYT Community can participate, whether you think you are a writer or not.
  • Respond to the writing and not the writer.
  • Be sensitive and respectful.
  • All work is assumed to be fictional.
  • If you aren’t given the information in the writing piece, you aren’t privy to it. Be conscious of boundaries.
  • Feel free to direct message one another, by tapping on a user’s avatar, but the chatroom’s use is first and foremost for leaving writing pieces and commenting on them.
  • It’s ok to suggest edits, but be constructive with your criticism.

2019 is destined to be an epic year. So hop on board and follow along with us as we write our way through a new adventure together.


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Download the app here!

November 26, 2018

Caregiving for the Caregiver AppChat

Join us on December 12th at 9pm ET/ 8pm CT / 6pm PT for a LIVE conversation on Caring for the Caregiver.

Chat with Chasing Rainbows Young Adult Cancer Advocacy’s Pat Taylor and Lacuna Loft’s Mallory Casperson. Read below about our moderators, Pat and Mallory, two caregivers who will be guiding our discussion on self-care. You can be part of the dialogue in the Caregiver Chat room, located on the Stupid Cancer App which is free to download for both Apple and Android.

What we’ll be chatting about:

  • Types of Caregivers
  • Recognizing why self care is important
  • How to self care for the caregiver
  • What works and what doesn’t
  • Building a stable community of support
  • Resources available when no one else is

Pat Taylor became an AYA cancer advocate when her daughter, Sara, age 23, was diagnosed with cancer back in 1997. Addressing the lack of support resources for her peers and caregivers, Sara and Pat produced and distributed two films, Sara’s Story and Chasing Rainbows Young Adults Living With Cancer, and Chasing Rainbows Young Adult Cancer Advocacy was born.

Since then, along with other advocates and their support resources, Pat has watched the AYA Cancer Voice grow from a tiny whisper to empowered roar! Caregivers helped make this happen.

As a Parent and Advocate, Pat joins this Gryt Health Caregiver Chat, to share and explore with other Caregivers the immediate needs and on going challenges we face while navigating the unpredictable cancer storyline with our loved ones. Self Care is the key to being the kind of Caregiver we strive to be. How do we make it so? Join Pat to learn more.

Mallory Casperson was forced into the world of young adult cancer caregiving in graduate school when her mother was diagnosed with cancer. She was fortunate enough to serve as one of her mother’s primary caregivers during the last months of her life.

Two month’s after her mother passed, Mallory was diagnosed with cancer herself. Several years into her survivorship, Lacuna Loft, a nonprofit organization offering online support programs to young adult cancer survivors and caregivers, was created to connect young adults facing cancer together.

Understanding young adult cancer from both the caregiving and the survivor experience has allowed Mallory to become a strong advocate in the young adult cancer community. Self care is key to any caregiving experience and Mallory is excited to talk caregiving with Gryt Health!

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