The Make Change Challenge

May is Brain Cancer Awareness Month – or Brain Cancer Action Month, if you prefer. Either way, we’d like to ask you to take action and help us raise awareness this month by creating a little change – or more accurately, collecting a little change.

A little change can go a long way – and that’s more than just a saying – which is why we’re launching the “Make Change Challenge” to raise money throughout the month of May for brain cancer charities. Small amounts add up quickly and can make a big difference.

Please join us! Here’s how to participate.

How to Join the Make Change Challenge:

Step 1: Get out your craft supplies and create a Make Change Challenge container. It can be any shape or size, any color, any material.

  • Also, we would love to see what you create — share a picture of your container on social media with #MakeChangeChallenge and #WalkingforTravis. Find change in an interesting place? Post that, too!

Step 2: Find a prominent place to display your container(s).

Step 3: Collect and save change throughout the month of May.

Step 4: Donate your collected change to a program that supports brain cancer research and patient programs.

A few suggestions collecting change:

  • When making a cash purchase, save the leftover coins to add to your change jar;
  • If you live in a bottle deposit state, cash in containers for nickels & dimes and add the change to your jar – collect containers from neighbors to trade in for change.
  • Pick up discarded pennies (note: maybe best to carry some hand sanitizer in case you encounter some sticky money).
  • Do a little spring-cleaning around your house; you may be amazed how much change you’ll find in your couch cushions or under your washer or dryer.

 Are you competitive? Suggest a friendly competition among your family, friends and coworkers to see who can collect the most change in the month of May. You may even consider designating a prize for the person who does collect the most.

 At the end of the month, contribute the change you collect to an organization that supports brain cancer research and programs. Some of our favorites include:

 

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Awareness in Prime Time

By: Julie

photo posted on post-gazette.comIn March of 2016 the CBS crime drama NCIS aired an episode entitled Reasonable Doubts. We’re cord cutters (aka, folks who have given up cable) so we didn’t watch this episode until it recently appeared on Netflix, but here’s the gist of what happened: there was some sort of crime that involved something that happened to someone connected to the Navy. The main character, Agent Gibbs, had a gut feeling about what actually happened, but didn’t reveal what he already knew to the team who worked tirelessly to sort it all out, and in the end they solved the case. It was riveting as usual.

What was more interesting to me, however, was the sub-plot. The father of another character meets a homeless woman who is suffering from some sort of mental illness and he becomes obsessed with finding her the care she needs. In the end it turns out that she had once lived a normal and productive life with a loving family, but she slowly slipped into total madness until she was unable to remember her full name and could no longer function in the world. The cause, revealed in the closing moments of the show, was a brain tumor (inoperable and too far progressed for any effective treatment).

Travis, the Agent Gibbs of our family, suspected a brain tumor from the moment the character was introduced. To be fair, however, these days anytime we watch a show where someone has gone a little crazy, Travis generally diagnoses them with a brain tumor.

It was nice to see a spotlight placed on brain cancer in such a prominent platform, and particularly nice to see symptoms other than headaches and seizures portrayed as part of the equation. Here was a woman who was probably just a little out of sorts at first, but over the years she plunged into total madness from the thing that was growing in her head. Perhaps if she’d been aware that something so horrible could have been plaguing her, or if she had a loving friend, family member or partner who knew intuitively that her behavior was so dramatically different and that one logical explanation was that something was seriously wrong, this poor fictional woman could have been diagnosed before it was too late.

Awareness. That’s what we’re fighting for right now. Sure, incorporating brain cancer into the subplot of a prime time show was a great opportunity to raise awareness, despite the fact that when the diagnosis finally came the doctor delivering the news to the father character totally blew his big moment by horribly mispronouncing glioblastoma (seriously, watch it, – season 13, episode 16, time stamp 39:51). Here’s the thing — not only did the fictional characters miss signs and symptoms, ultimately no one on the set was aware enough to catch the mistake either.

As I’ve written previously, raising awareness for brain tumors can be tricky because brain tumors are zebras. An awareness campaign encouraging people to pursue treatments for symptoms that are most often benign would probably only make things difficult for doctors and patients alike. Further, proper pronunciation is hardly a solid platform to build an awareness campaign around. For one, it is a tough word to pronounce so mad props to the actor, Matt Champagne (who is credited by IMBD as “Dr. Glioblastoma”) for a solid effort. Also, I’ve spent a lifetime correcting pronunciation and grammar and trust me: no one likes it, so that campaign would almost certainly fail.

For months we have been trying to come up with big ways to raise awareness and funds for brain cancer. The more we talk with others about Travis’ diagnosis the more we see how great the need is for awareness. Travis’ decision to share his story was predicated on this need, and it fuels my new propensity to write like I’m running out of time (and yes, that’s another Hamilton reference). As we look ahead to May, which is brain cancer awareness month, we decided to stop focusing on big, and instead we’re going to try to do something small. Think pennies, small.

Stay tuned for another blog post that will go up later this week to learn more about Team Wolverine’s Make Change Challenge.

“It’s easy to ask if you believe in the thing you’re asking for.”

I’ve worked in non-profit organizations for most of my career, largely in the areas of education and youth programming. While it has never been my primary job, fundraising has always been a part of my work in one way or another. For a long time it made me uncomfortable because I hated the idea of asking people for money. I remember asking the development director at one of the museums I worked for how he did it day in and day out and his response really stuck with me. “It’s easy to ask if you believe in the thing you’re asking for.”

At times this mantra has made my job easier and at times it has made it more difficult. When I believe deeply in the value of the project or a cause I’m raising funds for, it’s now incredibly easy for me to conceptualize the details of a grant proposal, create an event, or organize a campaign. Likewise, when I don’t truly buy into an organization’s mission, I find myself uncomfortable, uninspired and with the same disdain for fundraising activities that I had early in my career.

It should come as no surprise to readers of this blog that I find myself especially passionate about one particular cause at this point in my life. The most important person in my entire world is battling a rare and aggressive cancer and while I’ve felt compelled to support many other causes in my life, I have never felt so personally attacked by something in the way I do by Glioblastoma. I feel like Liam Neeson’s character in Taken except I don’t have the “particular set of skills” needed to find and kill this tumor.

The people who do have those skills are doing an amazing job. There are entire teams of professionals that are working tirelessly to attack the tumor surgically and medically without destroying the parts of Travis’ brain that make him who he is. There are therapists who are working to restore the physical abilities and functions that have been effected by the tumor, and researchers who are studying Travis’ progress to figure out what more can be done to help him and others like him. Travis himself is fighting back against the tumor every day completing tasks that restore his cognitive functions, working out even when his body is exhausted from chemotherapy, and generally pushing himself to the edge of what his body can tolerate allowing the medical interventions to do what they need to do.

And then there’s me. Sure, I’m helping. I drive Travis to and from his appointments. I make schedules and calendars and meals that are “chemo friendly.” I make sure the cats are fed, the garbage is taken out and there are no strange smells in the kitchen that will make Travis feel worse than he already does. I deliver the poison prescribed to him on the schedule provided by his doctors and hold back tears as I watch him struggle to force it down. I politely suggest activities that might make him feel better, and then more forcefully push him to do said activities when he declines. I’m busy all the time but it never feels like enough. I want desperately to do more to help him and help others like him. I’ve never been so needed and felt so useless all at the same time.

So I look for ways to be useful in any way I can. The Jimmy Fund Marathon Walk gives me something positive on which to focus my attention on days when I feel completely useless. Those are the days when I take longer walks to get my body ready for the 26.2 mile trek, and the days my family and friends see an increased number of social media posts and fundraising requests show up in their news feeds. They may tire of seeing my posts (often cleverly disguised with cat photos), but I feel no hesitation sending them out into the world because this is a cause that I believe in.

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“No one asked for your Peanut M&Ms”

By Julie

We’ve all been there. You type out a text message or an email and then hit send only to realize a moment too late that your words have been changed by the evil autocorrect function on your device. Most of the time the results are harmless, or better yet hilarious, but occasionally they are terrifying and leave you in a cold sweat while you await a response from the person with whom you are corresponding.

Autocorrect once made me call my boss “Satan” in a group email with at least a dozen of my colleagues CC’d (his name is Stan). Worse yet, I once accidentally called my adorable nephew a horrible racial slur while exchanging text messages with my sister. Luckily, in both cases, all of the involved victimized parties were very understanding and had a sense of humor about the situation. That’s the thing about modern technology – we have all been there, so we all get it.

But imagine trying to function in society with your brain constantly auto-correcting the words you are trying to say, or the words others are saying to you. That is life with aphasia – a communication disorder that impairs a person’s ability to process language. In the weeks and months leading up to his cancer diagnosis Travis began to suffer from both expressive and receptive aphasia. With numerous speech pathologists in my family I had a vague familiarity with the term, but it still never occurred to me to label his occasional forgetfulness, word mix-ups, or inability to understand what I was saying to him, with any particular medical terminology.

The aphasia came on slowly over the course of about two months, and then suddenly over about 72 hours struck in a way that forced us to pursue immediate medical attention. Cows weren’t cows, they were fish. People were squirrels. All inanimate objects were chairs. In hindsight, it was so clear that something was wrong, then came the brain tumor diagnosis.

Post surgeries, Travis’ speech has begun to improve. He has worked tirelessly with researchers and his speech pathologist over the past five months to regain a lot of the functions he initially lost. Where there are still gaps I use context clues, logical semantics and my extensive knowledge of the man I’ve lived with for the better part of a decade.

It’s easy to adapt at home with many of his auto-corrected phrases even becoming a humorous part of our everyday conversations. Where Travis used to regularly quip, “no one asked for your opinion” when I would give him unsolicited advice, he now says “no one asked for your peanut M&Ms,” not because he can’t say it correctly but because it was hilarious the first time he said it. Still, speaking in public when you’re not 100% certain of what will come out of your mouth can be terrifying.

I’ve always considered myself to be an empathetic person, but even so I am guilty of making snap judgments based on what I see and hear from others. This experience with Travis has given me a greater level of empathy for those with hidden difficulties and challenge than I ever imagined I could have. It’s hard to be grateful in a situation like the one we have currently found ourselves in, but I am truly grateful for this life lesson.