Big thanks to Bob Buckley and his editor Eric Sander for doing an extended length story (very rare for local news) and Kate McNeely for turning Bob on to the story. We all have the power to raise awareness of this awful disease by showing the world this beautiful story. So share the above video and share our trailer and help us create awareness.

Photo by John Althouse/The Daily News

When a local teen learned that she would miss out of one her school’s biggest events, friends and family teamed up to bring that special night to her. White Oak High School freshman Sabrina Parker was shocked to walk into a family member’s nearby barn and see that it had been transformed into a homecoming dance with about 40 of her friends and relatives in attendance.

The dance was held two hours before her school’s homecoming dance on Oct. 16, with this year’s theme of “Haunted Homecoming.” The walls were adorned with spooky cobwebs, skeletons and balloons and a music system was set up so they could dance to their favorite songs. Sabrina’s boyfriend, Matthew Scozzari, 15, escorted her into the dance and guests crowned them as their own homecoming king and queen. A night that she thought she would never see became the night that she will never forget.

“Whenever she told me she wasn’t going back to school, I knew that she wasn’t going to be able to go to homecoming so I thought we should bring it here,” Matthew said. “I just wanted to spend more time with her more than anything.”

Last year, Sabrina, 16, was diagnosed with amyotrophic lateral sclerosis or ALS, which is often called “Lou Gehrig’s Disease.” According to the ALS Association website, the progressive neurodegenerative disease affects nerve cells in the brain and the spinal cord and includes early symptoms such as increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing.

The rest of the article can be found here.

Those afflicted with the deadly, degenerative neurological condition called Lou Gehrig’s disease could eventually bank their own stem cells for later treatment. That’s the hope driving new research funded by billionaire mall mogul and Pontiac native Alfred Taubman.

This week, Taubman announced a new collaboration between University of Michigan neurologist Dr. Eva Feldman, the director of the A. Alfred Taubman Medical Research Institute within the U-M Medical School, and Israeli doctor Benjamin Reubinoff of the Hadassah Medical Center in Jerusalem.

Billionaire philanthropist Alfred Taubman announced a new, privately funded collaboration between the University of Michigan and Israeli researchers that aims to advance understanding of the deadly degenerative condition known as Lou Gehrig’s disease.

Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease or ALS, is a neurological condition that robs its victims of their ability to speak, move and eventually breathe, while leaving their minds alert.

Taubman’s friend, long-time U.S. Sen. Jacob Javits of New York, died from the disease.

The rest of the article can be found here.

On the beach this summer, reading an old book of poetry, I looked up and saw a sign like the one below.

photo from NOAA

Maybe it was heat stroke or the daiquiri I was sipping, but I came to appreciate an odd relationship between the poem in front of me and that sign. The poem was Dylan Thomas’s famous meditation on struggling against death, Do not go gentle into that good night. I read it and imagined what I would do if I got caught in a rip current. As that current started to pull me out and under, I’m sure I would rage, rage against the dying of the light, as the poem implores. I’d give it all I had. My first instinct, though, wouldn’t be to swim diagonally, as the sign recommends. Instead, I would swim as hard as I could straight toward the shore. And chances are I’d eventually become exhausted and drown.

The sign promised a better way to burn and rave. Though this counter-intuitive approach couldn’t guarantee my survival, it certainly would increase the chances of it.

Later, back at work in the Duke ALS clinic and nursing a sunburn, I thought about my day at the beach and how it related to my experience with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease). What would I do if I received a diagnosis of ALS, or if one of my loved ones did? Like most of the 1,000 or so patients with ALS and their caregivers that I have seen over my last decade in this field, I’m sure I would fight it-in Thomas’ words, blaze like meteors against it. But without all my years of scientific and on-the job-training, would I know the best direction to go in?

The rest of the article can be found here.

In 2008, historian Tony Judt was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. ALS is a progressive motor-neuron disease that causes the central nervous system to degenerate. Over time, patients lose the ability to move their bodies, but retain full control over their minds. Judt describes the effects of the disease as “progressive imprisonment without parole.”

By 2009, Judt had reached a stage where he was paralyzed from the neck down and using a respirator — which he calls “facial Tupperware” — to help him breathe. He also started writing a series of essays for The New York Review of Books about his illness.

You can rest the rest of this article here.

Episode 19 : “Who Cares” — The Often Awesome Army gears up to take charge of Tim’s Quality of Life Care.

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 Kaylan’s fight and to help them please visit : http://www.oftenawesome.org

Often Awesome The Series on Facebook

For more information about the filmmakers.

Tim has always told us that we should ask for donations to help support this series but honestly we’ve been so busy just making sure the episodes get out on time every two weeks that it’s taken us this long (17 episodes) to finally get around to asking for your help to support this series. We do want to make one thing clear, we definitely don’t want people to donate money to support the series that might have otherwise been used for Tim’s quality of life care. Supporting Tim and Kaylan is the reason Andy and I are so passionate about doing this series. They need your help and we strongly encourage that you continue to support them especially now that Tim needs 24 hour care but if you find yourself with a little extra money and want to help support this series as well, we would be very grateful for your help.

No donation is too small or too big and all donations are appreciated.

To make a donation click on the button below:

Or you can mail a check to:
All Aces Media
606 Wicker St
Greensboro, NC 27403

What your donations will be used for:

We shoot this series in 1080 HD and that takes up a lot of storage space so buying hard drives is high on our list of things to do. We also travel a bunch to shoot the series. Usually it’s within North Carolina but we recently just filmed the Often Awesome benefit show in Mercersburg, PA. Obviously gas isn’t cheap and really we’d like to travel wherever there’s an Often Awesome event so covering some travel expenses would be great. We also have to borrow equipment to make these episodes happen so having some funds to pay for rentals or having a little money to purchase equipment in the future would be amazing.

As always, we appreciate your continued support of the series and are so thankful you are sharing the videos and helping us create awareness about this terrible disease.

Blake Faucette and Andy Coon

Episode 17 : “Band Together” — Tim and Kaylan return from their honeymoon to an Often Awesome benefit concert to help with Tim’s quality of life care.

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

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