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Paypalmergency and November Update

Oh delicious, fantastic, amazing Army,

This month, we are especially in need of your generosity and support. Over half of the paypal subscriptions will be expiring at the end of November. Without your gifts, it becomes very difficult to take care of Tim and provide him with the quality of life that he deserves. While we dream of a day when OA will be a non-profit and we can organize funding in a more professional way, right now, we rely completely on those subscriptions to take care of Tim. You can give as little as $5 dollars a month or as much as $50. Last year, along with many other people, I used my OA subscription in place of Christmas and Hanukkah presents. Rather than give my friends and family a bunch of stuff they didn't need, I chose 12 people in my life, and rather than buy them presents, I gave them each their very own month of OA sponsorship. I created cards and included a letter that described Tim, ALS and Often Awesome. If this is something that generates some interest, we'd be happy to make a template for you guys.

Please renew your subscription or begin a new one here: http://www.oftenawesome.org/?q=node%2F3
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I know you guys are all wondering how our boy is doing. Tim can no longer speak without his Tobii. We are waiting on a new one that will allow him to communicate when he's not in bed. He's now on an all liquid diet, but don't worry, he still enjoys a single malt scotch through his tube (we put just a single cc on his tongue). Also, he is in much better spirits now that his depression and pain meds have been adjusted. Our Timmy's fighting spirit is back in full force and his gears are turning. Expect big things. We're gonna take advocacy to the next level, my friends. Oh, and he wanted me to ask you guys to send the trailer to every person you know!

http://www.youtube.com/watch?v=4-FpROeybeI

Also, don't forget to keep sending Tim mail!! He loves it and hasn't been getting much lately!

OAA
c/o
Angela Cook
P.O. Box 606
Summerfield, NC
27358

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Sigh. Have I mentioned lately how much we love and appreciate you? This crazy thing we're doing has expanded beyond our little community. Often Awesome has developed into something bigger than we ever expected and now has two distinct roles. Initially, we formed this group for those of us that loved Tim, wanted updates, and needed to know how we could help. As time progressed, we saw the impact that our story was having on a larger community. Tim became keenly aware of his mission to spread ALS awareness.

This thing is no longer simply about Tim. Often Awesome has officially become a full fledged ALS awareness movement. The web series has allowed us to reach a huge audience and has moved so many people that don't even know Tim. Of course, in addition to Andy and Blake's genius and Tim and Kaylan's amazingness, the web series is so powerful and moving because of YOU. When I ask anyone which episode is their favorite, inevitably, they will describe an episode that really highlights the community love and support. Without the beauty of our human interaction, this movement simply couldn't exist. Like I've said before, you can't think about the Often Awesome Army without feeling moved by the beauty of a community's capacity for love and generosity. So thank you guys. As lengthy as this email has gotten, there really just aren't words.

love love love,
lis

Updates from OA

Hello, darling Army

No major health updates today, we’re just writing to give you some information.

Most importantly, a lot has changed with Tim’s care needs since the original trainings. I know a lot of you have messaged me to let me know that you are interesting in taking on some caregiving responsibilities. We’re getting ready to schedule some new trainings and I would like to get all of our volunteers in one place. Will you email me (lis) at info@oftenawesome.org ? Please put “care training” in the subject and include all of your contact information in the body (phone, email, facebook, everything). Also, please note your schedule availability for both training and care.
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Tim wanted me to put in a special request to our army asking you guys to join and donate to this very special cause:
http://www.causes.com/causes/547485-adopt-an-als-family-winter-fundraise...

From Michele Dupree:
“I am just overwhelmed with devastating emails of people literally in poverty due to ALS. They're overwhelmed with how they will pay for heat or food- and can't even think about the holidays. It's so sickening! anyway- if you would- every penny counts and we need an army here!!”

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Also, Kate McNeely wanted me to share a few things with you guys:

“As you all know, we have several things ongoing to promote ALS awareness right now.
Wednesday night, Fox 8 News, WGHP, ran an extended story by Bob Buckley about Often Awesome. You’ll recognize a lot of the footage, since most of it was donated by Blake and Andy from the Often Awesome: The Series archives! Bob and his team were caring, professional, kind and complimentary throughout this process, so take a look at the segment, posted here:
http://www.myfox8.com/wghp-story-buckley-report-101110,0,3771086.story
…and remember to show your support for those who are helping promote ALS awareness and telling our dearest, darlingest Tim’s story! Follow this link:
http://www.myfox8.com/about/station/wghp-contact-us-programming,0,654711...
…to write to Fox 8 and thank them for their help in the fight against ALS!

We’re trying to get Often Awesome: The Series nominated for a Mashable award, for Most Creative Social Good Campaign. It would be a wonderful way to draw attention to this incredible story and to help Andy and Blake get a teensy fraction of the credit and recognition they deserve for the work they do! The link to vote is here:
http://mashable.com/awards/votes?c=34&v=www.allacesmedia.com%2Foftenawesome
…and you can go back and vote again daily! Try attaching the link to your email signature with a brief explanation, posting it on Facebook, or just going to oftenawesome.org, clicking on the pretty blue Mashable box on the right side of the page, and dragging it into your browser’s bookmark bar! That way, you’ll remember every day!

Most of you have seen the new trailer for Often Awesome: The Series. If you haven’t stop what you’re doing. Right. Effing. Now. And go watch it at http://www.youtube.com/watch?v=4-FpROeybeI

Our mentions online, in the press, on blogs, etc. have been picking up lately, which is an excellent sign for ALS Awareness. If you have any ideas or leads for stories, please feel free to send them to Kate@OftenAwesome.org. I’ll totally help you.
And remember, babies, that you can give and encourage your friends to give, at http://oftenawesome.org/?q=node%2F3 or to Tim’s favorite ALS Charity, ALS TDI at https://www.als.net/GetInvolved/Donate.aspx
No amount is too small to make a difference! Also, if you are a corporation and would like to donate to Often Awesome but need nonprofit status in order to contribute, please donate to Often Awesome The Series at http://www.allacesmedia.com/oftenawesome/2010/08/18/donate/ .

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As always, we love you guys. Thank you so much for your boundless love and support.

love love love,

Lis, Kate, Michele, and Tim

Episode 24 : A Flock of Tattoos

Episode 24 : “A Flock of Tattoos” — Nate Hall opened up Legacy Irons Tattoos and graciously held a benefit for Tim and the army. Over 50 tattoos in 6 hours.

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

Calling all Inventors!

hello all. sorry this is going to be such a short update. i have been practicing my eye typing a lot which is swiftly becoming my only form of communication. It's a bit isolating, but not as frustrating as trying to have people try to read my weakening lips. Anyway i promise to update more thoroughly soon but this is more narrow in purpose.
Michele Dupree has graciously donated an adjustable sleep number bed which is on its way to solve my intense discomfort.

However it has no bed rails which is a huge problem now that i tend to shit on a pad on the bed. Yes, you read that correctly. Anyway for that and other reasons i often need to be rolled over in bed. No rails means Tim falls off the bed go bye bye. Since the sleep number bed is not a medical bed, they dont make them. Does anyone know a way we can put a rail on at least the left side of the bed? if not i fear it cant stay. So if anyone has any solutions (remember that this is an adjustable bed) please let me know. love ya.

tim

[ admin edit - If you guys have any suggestions please email us! info@oftenawesome.org ]

Episode 23 : Staying Alive

Episode 23 : “Staying Alive” — Tim has been on machine assistance to continue living for sometime now. This episode is about Tim’s nurse, Lorin that supports his daily routine in order to continue living.

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

Halp!

Well, the good news first. Tim's health has been pretty stable lately and things have been going pretty smoothly. So, even though it doesn't sound very eventful, it's still good news!!

The bad news and reason for the email: Kaylan was in a fender bender today. This means that, while she can still suction Tim, she can't perform her normal care duties... meaning range of motion, getting Tim in the sling, propping Tim up, etc.

For the next week or so, I'd like to schedule people from 5:30pm-11pm, with a special emphasis on the 8pm-11pm shift. This weekend will require coverage during the day. People don't need to be trained, since Kaylan can handle the vent/trache related stuff- you just need to be willing to do some heavy lifting!

Facebook me, email me (info@oftenawesome.org) or text message me (336.339.9668) and we'll start getting the calendar sorted out.

I'll keep you updated!

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On a non-care related note, I'm going to start bugging you guys about nominating Often Awesome the Series for the Mashable Awards in the category of Most Creative Social Good. This is a great way to spread ALS awareness!! Remember to vote daily and to share on facebook as much as possible!

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Halloween:

The amazing Sarah Nees pointed out how awesome it would be to show our Often Awesome army support through pumpkin designs. She made some badass templates to share with the group and I'm sorry I'm only getting around to it now!

See here:

https://docs.google.com/fileview?id=1_mkGKDt5GXd89Ep2W6ChShF9iY-tLr54dM4...

and here:

https://docs.google.com/fileview?id=10vcBWUEdG7UVgmEHjAQwdJfWGkGiGWxkQm9...

love love love, amazing soldiers.

lis

Episode 22 : Selfless Acts

Episode 22 : “Selfless Acts” — People in the community learn about Tim’s fight with ALS and decide to step into the awareness campaign and throw a couple of benefits for Tim’s quality of life care.

To purchase a fight ALS shirt go to…
http://soundvolume.bigcartel.com/product/fight-als-tee

More about the Gate City Rollergirls…
http://www.facebook.com/?ref=logo#!/pages/Greensboro-Roller-Derby/293891716929

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

Web site issues

Hello Army!

As you may or may not have noticed. We experienced an issue with the site today, the exact cause has yet to be determined. However, with the help of James Gross the site has been restored and updated to current specifications with Drupal to prevent future concerns. There is no chance of any financial data being leaked as everything is stored within paypal and no data is stored locally within the site. If you were unable to access the site during the last few hours please forgive me as these things do happen. In any case, all is well now and we hope to see all of you at the upcoming event with the roller derby girls.

Thank You all for your patience while this issue was resolved.

Stay strong army!

-Will McChesney

Episode 21 : Because We Care

Episode 21 : “Because We Care” — Members of the Often Awesome Army who take care of Tim talk about why it is important to them to help in any way possible. This is a small sample of the people who caregive for Tim and his quality of life.

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

You people are amazing!

Hi Everyone!

I don't normally post blog entries that come from myself, but after what I witnessed today I feel compelled to do so. I don't know exactly how many people showed up to the tattoo benefit that Michael Sileno and Nate Hall put together today, but I can honestly say that you people have blown my mind. There were pictures of swallows flying around in every direction. The buzz and whir of tattoo guns became a constant resonant din. Smiles and tears flooded from every corner of the building all day long. Stories were swapped and tales regaled as the flow of people coming and going never seemed to end. I may not know your name, but know this, I LOVE each and every one of you. You all give me hope for humanity and I look forward to seeing you again and pushing the boundaries of how much awesome I can witness in a day.

49 tattoos were completed by the skilled artists at Legacy Irons today, together they raised $1600 to help this cause. I want all of you to know that you are wonderful and amazing. We appreciate everything that you do and together we are making a difference.

Stay strong army, for together we can make tomorrow a brighter day.

With humble admiration,
Will

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