On the News

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Today I was interviewed by a local TV station about our Concert for the Cure. I was calmer than I thought I would be, which is probably a good thing. I was wearing my “Hug Like David” t-shirt, and I could almost hear him saying, “It’s only awkward if you make it awkward.” While I’m not sure that is true in all situations, it worked for me today.

We are slowly gaining momentum on the concert, and as usual, I’m behind on a lot of things… Including updating you all on the Race for Hope and the Head to the Hill events that took place over the last few days. I will write about that when I can share some pics. Both went really well and made me excited for next year!

Remember to keep wearing your grey this month and send me a pic!

UPDATE: I have heard from a few people that the link to sign the stamp petition doesn’t work. I tested it, and I believe that if you have signed it in the past, it won’t work. If you haven’t signed it, it should. Also, if you have signed it, you should be able to successfully click on the link to share it with others. If someone finds that to be incorrect, will you please let me know? Thanks!

 

Snowballs in May!

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Wear Grey For David

Not sure if you’ve seen the weather, but Kansas had snow on May 2nd. SNOW! In MAY! That’s a little crazy, but it is a good representation of how different THIS May is going to be.

There has been a lot going on for brain cancer advocacy, and it is only the 3rd day of the month! I’m so excited to see the real differences we are making! All day yesterday, I was getting updates on stuff, and I felt like my list from yesterday was inadequate by the end of the day so I made a new list.

Let me remind you that this is just a small sampling of what is going on out there. We are trying to post stuff on the Operation: ABC “Annihilate Brain Cancer” page, but please forgive us if we miss something. Likewise, if you know of something we can help promote, please let us know.

Here’s my updated list of things you can do no matter where you are:

1. Wear Grey. Wear Grey Every Day in May. Ok, you don’t have to wear ALL grey. But wear something grey EVERY day. Tell people why you are doing it. Do it for awareness. For solidarity. Do it to show the world that fighting brain cancer is important. Grey isn’t a very noticeable color (like pink) so it is going to take A LOT of grey to get noticed. But we can do it! #GreyAllMay

2. You can donate via IndieGoGo to make sure the concert is a big success:
http://www.indiegogo.com/projects/concert-for-the-cure-wichita/x/3067213?c=home

3. You buy something in the Origami Owl fundraiser that is going on throughout the month of May:
Origami Owl designer, Karletta Pergeson, has offered to donate 10% of your purchases made between now and May 30th to “Concert For The Cure”. Origami Owl is a unique line of lockets. Every Living Locket™ is custom designed with charms that tell the story of your life and represent the things you love. They even have a grey brain cancer awareness ribbon!

Please place your orders online at http://www.momoftwo.origamiowl.com. There you will find everything you need to design yourself a beautiful locket! The website is set up in an “a la carte” style, where you choose which locket you would like, then pick the chain, charms and plate you want for the inside. And if you choose, you can have dangles to hang outside the locket. Upon check out please select “Concert For The Cure” so that your purchase will be counted.

4. Take a trip! Eaglewings Travels will donate 10% of any bookings in May to Concert for the Cure! You don’t have to travel in May – just book the trip before the end of the month!

How awesome is that? Take a wonderful vacation and know that you are helping others at the same time!
To book, you can email Colleen Atherton, Owner at catherton@cruiseholidays.com or call her at
316-214-5426 http://www.eaglewingstravels.com

5. Change your Facebook profile pic. If you haven’t seen an image you like, you can find a few here:
http://campaign.customink.com/grayinmay

6. Go like the Operation: ABC “Annihilate Brain Cancer” page (https://www.facebook.com/OperationABC). It lists events around the country and tries to give a unified voice to the brain cancer family. (Oh yeah, we’re a family. You need everyone you can get to help fight this beast.)

7. Sign up as an advocate with the National Brain Tumor Society (http://www.braintumor.org/advocacy). This is NOT scary. You are adding your name to a mailing list, and they will email you when they need your help. “Help” usually consists of using an online form to write your Congressman and encourage more funding for research. Simple as that.

8. Help make a cool postage stamp that says “Stamp Out Brain Tumors”. All you have to do is sign the petition here: https://secure2.convio.net/bts/site/SPageServer?pagename=AwarenessStampPetition

9. Send a Tweet. Novocure will donate $5 to the Chris Elliott Fund (a charity that helps patients and families with GBM diagnosis and supports brain cancer research) when one of their tweets are retweeted – using the hashtag #TuneIn2GBM Look for them on Twitter, @EndBrainCancer ! Follow them, then retweet our messages that uses the hashtag #TuneIn2GBM.

To retweet: put your mouse over the message. A small menu pops up at the bottom. Click the one that says RETWEET. This will copy our message to all of the people who follow you. Then follow up with that tweet by posting a message to your followers, asking them to retweet the message you just sent.

10. When you do any of the things on this list, you can use #GreyAllMay on Twitter to let people see your activity for brain cancer advocacy.

We’ve made the snowball, now let’s push it down the hill!

Five Things You Can Do To Save Lives

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Since Alexander Moore already took the best blog title (see his post here:https://alexandamymoore.wordpress.com/2013/05/01/may-day-may-day/#comment-808), I’m going to go with the tried and true list. You see, today is May 1st. The first day of what the U.S. calls Brain Cancer Awareness Month. For many of us, it is every month because we have seen first hand the damage this particular cancer can do.

I’ve talked about this before, but here’s a little recap if you are new. Brain cancer does not discriminate. It can happen to anyone at any time. They don’t know what causes it. You can live a healthy lifestyle or be a complete degenerate.

I have a few theories on why you don’t hear about brain cancer much. Bear with me on this for a minute because I believe it is part of the reason why brain cancer doesn’t get as much attention as some of the other cancers.

When a person is diagnosed with brain cancer, it is frequently in a stage that requires immediate attention. There are not clear winners on what treatment to choose, so that means you have to research for yourself what course of action to take. Unfortunately, a lot of the reasons you would be diagnosed with brain cancer are also things that can impact your ability to reason through these situations. Fatigue, extreme headaches, and confusion are a common part of the symptom package sometimes rendering the patient a less than active participation in the search for treatment options. Add to that that the patient may be too old or too young to use today’s research tools effectively, and you can begin to see a problem.

It doesn’t stop there, though. Let’s say you are patient who doesn’t have debilitating symptoms (like my son was) and you are of an age to both understand some of the research and use the research tools (like some of my friends are). Good for you! But now, you have to decide if you want the world to know that you have a disease that could impact your cognitive skills. How will your employer react? Your friends? If you have a “good” prognosis, you may decide to tell as few people as possible so you can get back to “normal” as soon as possible. I can’t say that I would do it any differently, but it is one less voice in the fight. No, it’s more than that. Because if that person doesn’t speak out against brain cancer, then there is a large possibility that their friends and family won’t either.

But let’s go back to those too young or too old patients. Why don’t those families speak out? Well, a few of them do. A quick search will find stories of brave little tykes running touch downs or visiting Disneyland. But for every story you see like that, there are more who are too sick to do that. Or who don’t want those precious few days they’ve been given to be taken away by the media and strangers. Or who are just simply too overwhelmed with treatments and symptoms to find a way to reach out.

And those older patients? I think more and more of those families ARE speaking out thanks to social media. But the mainstream media doesn’t care that your 75 year old dad is dying. That is an “acceptable” age to die. Nevermind that people in your family live into their 90’s and your dad was out playing golf the day before he was diagnosed. I know this sounds a little cynical, but I really believe that is the case. I give a lot of credit to the TRBC “sisters” (find them here:https://www.facebook.com/pages/TRBC-for-TRBC/179797368810544) who united via Facebook because they had each lost their dad to brain cancer.

We are finding our voices, but we need your help. It’s not even hard! Here are 5 EASY things you can do to raise awareness for brain cancer research:

1. If you are on Facebook, go like the Operation: ABC “Annihilate Brain Cancer” page (https://www.facebook.com/OperationABC). It lists events around the country and tries to give a unified voice to the brain cancer family. (Oh yeah, we’re a family. You need everyone you can get to help fight this beast.)

2. Sign up as an advocate with the National Brain Tumor Society (http://www.braintumor.org/advocacy). This is NOT scary. You are adding your name to a mailing list, and they will email you when they need your help. “Help” usually consists of using an online form to write your Congressman and encourage more funding for research. Simple as that.

3. Help make a cool postage stamp that says “Stamp Out Brain Tumors”. All you have to do is sign the petition here: https://secure2.convio.net/bts/site/SPageServer?pagename=AwarenessStampPetition

4. Wear Grey Every Day in May. Ok, you don’t have to wear ALL grey. But wear something grey EVERY day. Tell people why you are doing it. Do it for awareness. For solidarity. Do it to show the world that fighting brain cancer is important. Grey isn’t a very noticeable color (like pink) so it is going to take A LOT of grey to get noticed. But we can do it!

5. Attend an event or sponsor one online. I happen to know that even $5 would mean the world to the people who are organizing an event or running a race. For $5, you can tell them that what they are doing matters. Of course, you can tell them with more money, too, but you get the idea.

You can even sponsor our Concert for the Cure online:

http://www.indiegogo.com/projects/concert-for-the-cure-wichita/x/3067213?c=home

I’m gonna go make a donation to a friend’s team right now. Why don’t you join me? 😮

 

Addition: The lovely Amy Moore reminded me that you can also show your support by changing your Facebook profile and/or your cover photo to show your support. If you don’t already have one, there are some great images here: https://www.facebook.com/media/set/?set=a.457134687694742.1073741826.109926575748890&type=1