This is exactly why we need to create more awareness about ALS

Posted on: December 5, 2010
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Family and friends are remembering a White Oak High School freshman and the remarkable impact she made on the entire community in the past year.

Sabrina Parker, 16, died on Tuesday surrounded by family and close friends at her home after a year-long battle with amyotrophic lateral sclerosis or ALS, commonly referred to as “Lou Gehrig’s Disease.”

Most people who develop ALS are between the ages of 40 and 70. Sabrina — who was diagnosed at 15 — was the youngest patient to be treated for the disease at Duke University Hospital.

Her grandfather Noland Parker said that Sabrina maintained a positive attitude and made the best of every moment.

“She enjoyed life the best she could, and we allowed her free reign on that … We didn’t try to hold her back because we were scared something might happen,” Noland said. “She liked her freedom and wanted to get up and go when she wanted to and not let machines or this disease hold her down.”

Noland and his wife Zelma became Sabrina’s legal guardians after her mother, Melissa Kay Parker, died from ALS at age 24. He said that they enjoyed watching Sabrina grow into a mature and respectful young woman.

“She was kind of quiet and she got along with everybody and she did everything that other kids were doing,” he said. “She played softball and liked to be around her friends, talking and texting on the phone; she liked listening to music.”

As her health worsened, Sabrina lost her ability to breathe, swallow and speak on her own, and her weight began to drop significantly. She had to eat through a feeding tube and had tracheotomy surgery in September to aid with her breathing and speech.

Because of her daily medications, breathing treatments and fatigue, she was unable to return back to school. However, it was her relatives and friends who stayed by her side along the way to keep her going.

On Oct. 16, Sabrina’s boyfriend Matthew Scozzari, 15, and 40 of her friends at White Oak High School surprised her with a special homecoming dance at a relative’s nearby barn. Matthew said that he was honored to spend every moment that he could with her.

“She made me want to be a better person… Just being with her those last few moments I wouldn’t change for the world,” he said.

Read the rest of the article here.

Often Awesome on Fox 8 News

Posted on: November 12, 2010
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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.

White Oak student is youngest patient treated at Duke for ALS

Posted on: November 10, 2010
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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.

Planned research into Lou Gehrig’s disease could let patients bank own stem cells for treatment

Posted on: November 5, 2010
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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.

Fight Smart, Not Just Hard by Richard S. Bedlack M.D.

Posted on: November 2, 2010
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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.

A Historian’s Long View On Living With Lou Gehrig’s by Tony Judt

Posted on: November 2, 2010
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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.

Tweet and Win an Often Awesome the series DVD

Posted on: October 8, 2010
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OK people, go to our twitter account and retweet our last post for a chance to win an Often Awesome the series DVD containing the first 14 episodes.

Winners will be chosen at random and we will get in touch for address and information.

Health update from Tim

Posted on: September 16, 2010
5 comments so far (is that a lot?)

hello everyone. i realize that it’s been a while since i’ve updated the wider community to my condition. i think that most of you have correctly assumed that unfortunately i haven’t taken to ventilation as well as other patients have. i don’t know if this is because i have sod1 als (the most aggressive form for those who may have forgotten) of if it has just been bad luck. suffice to say i’ve spent far too much time in the hospital in the last 2 months.

my first return to the hospital, as most of you know, was due to a rather vicious case of mrsa double pneumonia. however, after what was supposed to be my triumphant return home i found myself back in the hospital due to a never-ending stream of blood being sucked from my lungs.

kaylan and i have faced our fair share of challenges during the course of this disease but this past week has been the hardest by far. there have been never-ending problems with the hospital system that neither knows anything about als or seems to care to learn anything about it despite that face that i’ve now spent a majority of my past 2 months here. there have been incredibly intrusive procedures that have left me terrified and exhausted in ways that i never thought possible. there have been numerous fits of suffocation due to mucus plugs and other lung obstructions that had me convinced that i was going to die right then and there. in truth, it’s been probably the worst week of our lives.

because of my weakened condition and incredibly unpredictable mental state we decided to keep visits to the hospital limited to family members. this in no way reflects the lack of love and appreciation that we feel for all of you, particularly our friends that live nearby. i’m usually a “the more the merrier” type, but this week was far too overwhelming. i hope you guys understand.

in another sense, this week has really forced our hand in a way that i didn’t expect to happen so soon. i honestly thought that by getting the vent i could continue for years but the recent health scares have forced me to consider things that i’d rather not think about at all, primarily the fact that this disease is killing me. i have no choice but to consider the possibility that it may be happening sooner rather than later, whether i like it or not. with this on my mind, i’ve had to consider many different possibilities and variables. for instance, do i want to start hospice and palliative care? should i continue as i have been and hope that things get better (an extreme unlikelihood when you have a progressive disease). is there a point at which the physical pain and psychological torture that i face daily will lead me to decide to remove my vent and die peacefully? needless to say, i have absolutely no answer to these questions as well as the many other questions that have been swirling through my head all week.

what i do know is this: i don’t think kaylan and i have cried more in our lifetimes than we have this week. not only has it presented us with more questions than answers, but it’s smacked us in the face with the reality that we don’t get to have a lifetime together. that alone is enough heartbreak for a lifetime.

i know this letter strikes a very different tone than my previous ones but i know there’s been a lot of questions and speculations about my state over the past few weeks. physically speaking, the short answer is i don’t know. the doctors seem to think that most of the blood came from improper trachea suctioning. but the real reason i haven’t written is it’s almost impossible for me to keep it together long enough to update everyone. But to me, that’s not a good enough excuse for radio silence. the truth is that without you guys, i can’t imagine the state that kaylan and i would be in right now. your emails, messages, postcards, and letters have been incredibly bright moments for kaylan and i over this very rough period. though many of them have been read through teary eyes, they have been constant reminders of how truly blessed we are.

i promise to do a better job of keeping everyone updated. you have all showed us such selfless love that it’s the least i can do. i only wish i had enough time on earth to completely show my deep appreciation for everything you guys do.

to my friends who are nearby, please understand that it may take me some time before i emerge from my shell. Along with my mental state, the hospital provides me with almost no rest. Also, my speaking voice has become very weak, and i can’t go for more than half an hour without speaking in a whisper. Because of all this, please call before coming for a visit to see if i’m up for it. Please don’t take this personally – you guys are my rock and once i start feeling some of these things out, i’m going to need you more than ever. And to those of you who are further away, i hope that my updates will suffice temporarily until i get my head screwed back on.

please don’t mistake this letter to mean that i’m throwing in the towel or giving up. i still have an awful lot to live for. i am simply trying to be as candid as i can be at this very moment. after all, you guys deserve it.


From Lis: Just a reminder, if you want to send cards, please send to:

c/o Angela Cook
PO Box 606
Summerfield, NC

Sound Volume Clothing presents the Often Awesome Benefit T-shirt

Posted on: September 10, 2010
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Our dear friend Tim LaFollette, is currently in a battle with ALS. However, from such sorrow has emerged the Often Awesome Army, a group of family and friends that has turned into a very strong force that is doing all they can to battle ALS. The imagery on this shirt is symbolic of the tattoo Tim has on his arm of the flying swallows which are in memory of his Mother, who passed away due to ALS. There are a great number of individuals in the Often Awesome Army that have also gotten the tattoo in support of the cause and it’s symbolism. Although this shirt has local significance, by purchasing this shirt, you donate $10 to combating ALS through the Often Awesome organization. All Tim has asked throughout his battle is that we all work together to spread the word about ALS, to make people aware. This is a horrible disease that affects millions of individuals worldwide. Please purchase this shirt, wear it with great pride, and help us fight ALS!

Shirts can be purchased here.