Often Awesome The Series

Episode 16 : Walk This Way

admin — Mon, 26 Jul 2010 19:19:57 +0000

Episode 16 : “Walk This Way” — Greensboro hosts “Walk to Defeat ALS”, while Tim and Kaylan are in Scotland enjoying their honeymoon.

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 about Tim and Kaylans fight visit : http://www.oftenawesome.org

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Link Between Professional Italian Soccer and Lou Gehrig’s Disease (ALS)

admin — Thu, 22 Jul 2010 19:19:23 +0000

An interesting article about Dr. Chio, a professor of neuroscience at the University of Turin, and his study of ALS in soccer players in Italy. It was published in The Florence Newspaper written by Shannon Coleman.

Chio’s study included native Italian male professional soccer players who were on the team roster from 1970-2002 and played in at least one official match. 18 cases of ALS were found (3 cases were excluded because they were not Italian and 10 cases were excluded because they were before 1970) Researchers interviewed all living players with ALS and gathered family histories paying close attention to neuromuscular disorders. Specific questions were asked and include things like, soccer activity and which position he played and the teams he played for, major physical traumas and drug use. This study concluded that none of the players were affected by the inherited type of ALS. Rather, all of the players were affected by the “sporadic” type.

Read more…

Could there be a link with environmental toxins, head trauma or drug use? Who knows, but at least there is something to look into.

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Thanks to Savage Love podcast!

admin — Wed, 21 Jul 2010 15:28:44 +0000

During the newest podcast of Savage Love, Dan had a caller ask how Tim was doing and Dan was nice enough to give Often Awesome a plug where his listeners could check out the series to see how Tim was doing. For those of you who don’t know, Tim and Catie Braly have a recording project called the Popovers and they wrote the theme song for Savage Love. We just wanted to thank him for for his continued support of the series and to thank all of his listeners who have followed Tim’s story. It means a lot to us and I know Tim is very appreciative.

Please check out Savage Love and you can also find Dan on Youtube and Facebook.

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ALS Association 4ALS Campaign at Yankee Stadium

admin — Wed, 21 Jul 2010 13:37:43 +0000

Young ALS Patients Come Together to End ALS with New National Campaign The ALS Therapy Development Institute (ALS TDI) announced today that...

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Episode 15 : Across the Pond

admin — Mon, 12 Jul 2010 14:40:23 +0000

Episode 15 : Across the Pond — Tim’s friends from Scotland reminisce about Tim’s impact in their lives.

For more information about Tim and Kaylans fight visit : http://www.oftenawesome.org

If you are interested in funding research, please make tax deductible donations to the ALS TDI at: http://www.oftenawesomearmy.alscommunity.org

Episode 12: The Wedding Episode 12 : The Wedding — Tim and Kaylan become...
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Update on Tim (from Lis Tyroler)

admin — Sun, 11 Jul 2010 16:11:59 +0000

Darling Often Awesome Soldiers,

This morning, Tim received a voluntary tracheostomy at Moses Cone Hospital. He is in recovery and when he woke up, he made the surgeon say, “It’s a boy!” Typical Tim, maintaining his sense of humor through the pain.

He is not currently able to speak but can communicate via communication board and his eyetracking computer, which he’s getting quite good at. Apparently, they plan on changing the cuff ASAP and will potentially speak even better due to more breath and energy.

I will keep you all updated as things progress!

All my love,

lis

Tim’s Speech from the Often Awesome Benefit Show (5/18/2010) Almost a year ago we met here. It was the...
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Episode 14: The Honeymoon

admin — Mon, 28 Jun 2010 18:13:12 +0000

Episode 14 : The Honeymoon — Tim and Kaylan head off to Scottland to celebrate their marriage and reunite with some of Tim’s friends from his youth.

For more information about Tim and Kaylans fight visit : http://www.oftenawesome.org

If you are interested in funding research, please make tax deductible donations to the ALS TDI at: http://www.oftenawesomearmy.alscommunity.org

Episode 9: A Work Of Art Often Awesome The Series is a web series about Tim...
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Flip Of A Switch

admin — Wed, 16 Jun 2010 18:46:55 +0000

According to Andrew Gengos, president and CEO of Neuraltus, the company’s experimental drug is designed to flip a molecular switch in cells known as macrophages in the blood and microglia in the central nervous system.

“There’s a switch that it hits,” Gengos said, “that regulates these cells from an activated, inflammatory mode back to a more normal, wound-healing mode.” (For more about this phenomenon, see ALS: Not Just About Motor Neurons Anymore, in the May-June 2010 ALS Newsmagazine.)

Testing in ALS research mice has shown NP001 flips a molecular switch, turning certain immune system cells from damaging to protective.

Neuraltus is completing its mouse studies, and hopes to conduct a phase 1 safety trial of NP001 in people with ALS by fall 2010.

See the full article here.

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Episode 13: Shirt Off My Back

admin — Wed, 16 Jun 2010 17:56:23 +0000

Episode 13 : Shirt Off My Back — A community comes together to create an amazing quilt for Tim and Snüzz, who are battling terminal illnesses.

For more information about Tim and Kaylans fight visit : http://www.oftenawesome.org

If you are interested in funding research, please make tax deductible donations to the ALS TDI at: http://www.oftenawesomearmy.alscommunity.org

Episode 9: A Work Of Art Often Awesome The Series is a web series about Tim...
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The Miracle Of ‘Molecule 00846′

admin — Sun, 13 Jun 2010 01:09:15 +0000

It is the 846th drug that the Massachusetts lab ALS TDI has tried since 1999 to slow the progression of ALS.

And the first to work in lab mice. It’s expected to go to human trials next year, and Nieto hopes to be part of those trials.

“It’s the biggest thing that’s ever happened in ALS,” say Nieto and his wife Lynne – who themselves have been the biggest fundraisers in the history of the disease.

See the full article here. More information on 00846 can be found here.

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