Thanks for the link, @4. I've followed this since ALS killed my aunt. I wouldn't go so far as to say it's THE cause, and false hopes have been raised many, many, many times before, but it does suggest common intermediate mechanisms in both familial and spontaneous ALS.
ALS is considered an "orphan disease," however, affecting about 2 out of every 100,000 people, so developing drugs or other treatment modalities to modify a complex chain of events will not attract pharmaceutical companies—the profits aren't there.
Private donations and government research funding are essential.
@13 ALS research may be getting a huge boost in the near future. There is a growing body of evidence among retired pro football (NFL) players that points toward head trauma as a possible cause. Retired NFL'ers have a much higher rate of ALS incidence than the rest of society, so they may become a key study group. That means a lot of money & attention. And hopefully a long overdue cure.
Thank you for posting this. I was not aware of the Often Awesome Army and I am happy to know of it now. I have PLS (Primary Lateral Sclerosis) which is related to ALS (though non-wasting and non-fatal). A PLS diagnosis is not "official" until after 4 or 5 years as many with PLS actually have ALS. I have just bawled my eyes out watching all of the video episodes.
My mom met Lou Gehrig when she was a girl. Somehow her relating the story of that, plus his disease and death, kind of brought home the pain of ALS even though I've never met anyone who got it (though I've known an MS sufferer pretty well).
And obviously I didn't now Tim LaFollette either, but my sympathies to his friends and family in case they're reading this. He wrote a good song; I'm going to check out some of his & the Popover's other stuff.
@13 There are people being treated and cured, see
http://mpkb.org and
http://mpkb.org/home/diseases/als
for details.
The treatment is an off lable usage of a blood pressure medication to activate the Vitamin D receptor and activate the Th1 component of the inate immune system combined with pulsed antibiotics to clear the protiens which block the receptor, enabling cell wall deficent bacteria and other microbes to live as intracellular parasites.
The treatment successfully completed phase 2 trials under the supervision of the FDA for the treatment of Chronic Fatigue Syndrome, Fybromialga, Chronic Lyme Disease, and Sarcoidosis, though many other conditions respond to treatment as well. The strains of bacteria that are theorised to casue ALS are more virulent than in those implicated in other condidionts, but still respond to treatment.
Sorry @21, only shills join a blog just to flog a bogus treatment while misspelling everything under the sun, and only hacks name "scientific" protocols after themselves and create websites in their own honor. Raising false hope is more cruel than no hope at all.
Thank you so much for honoring Tim. Yes, this is a shitty disease and the worst way to watch a loved one go. He kept his sense of humor and humility. His spirit will live on in all of us.
My community here in the Triad of NC grieves deepy for him, his wife Kaylan and the rest of his friends and family. If you would like to learn more about his 2-year struggle, please go to the website www.oftenawesome.org and watch the episodic video chronicle of his path from his diagnosis to his eventual entrapment within his own body. He was a wonderful man and continues to be an encouraging spirit!
My community here in the Triad of NC grieves deeply for him, his wife Kaylan, and the rest of his friends and family. If you would like to learn more about his 2-year struggle, please go to the website www.oftenawesome.org and watch the episodic video chronicle of his path from his diagnosis to his eventual entrapment within his own body. He was a wonderful man and continues to be an encouraging spirit!
My condolences to Tim's family. We lost a dear friend to ALS earlier this year. Both our friend and Tim leave (very different) wonderful contributions to the quality of my life. Lucky me to have had them in the world.
Thanks for posting Dan. A shitty, horrible thing that brought out some of the best in people. Every time i hear that song on the podcast it will think of Tim, Kaylan, and the Often Awesome Army.
That's just so sad. ALS is a terrible disease. Let's hope our nation's CONTINUED FUNDING of basic science and medical research can one day end this horrible illness.
I am sad to hear this. I remember when his friend/bandmate called in to the show and spoke about him, mentioning that he suffered from ALS. My condolences to her and to the rest of Tim's people.
Thank you Dan, and thank you everyone for your kind thoughts. He had such an infectious energy, and was one of my dearest friends. We were honored to have our theme song as a part of the Savage Lovecast, and we thank you so much for your continued support. As the surviving Popover, I am honored to keep the music alive. And to fight ALS. It can, indeed, go fuck itself.
Kaylan, and family, this is Jan Gallimore, who was part of Tim's ALS Support Group. Our hearts and love go out to all of you. We lost Dick, my husband feb. 1st. 2011 to this horrible illness, so
we have been walking in your same shoes . I'm part of a Hospice support group now trying to put my life back together the best way I can. Both our sons, Rick and Brian have really been struggling as well, and there is no easy way to get through this. I do get some peace in knowing that both Dick and Tim are now at peace, and free from the horrors of ALS. Please, feel free to call me or e-mail if you get to the point where you think it might help you. Just know you are not alone in your pain, and time does help to bring some relief. You are a very strong person, Kayla, and this strength will carry you through this. God bless, and know our prayers are with you all.
Our Love, Jan
E-mail jangallimore1@yahoo.com
Here's his story... told by his friends, family and him. I've only come across this today.(It's how I found this blog.) I couldn't stop watching. http://www.youtube.com/user/AllAcesMehtt…
I am one of the producers of the web series that documented Tim's battle with ALS. Please watch, educate and share with all. Tim and Kaylan showed the world how beautiful people can be. Thanks Dan,
Oh, that's too bad. I've honestly always really loved the podcast's intro and outro. It's very upbeat and fun and makes me excited for the podcast itself. RIP, Tim. You made some nifty music.
I grew up playing music in NC and did a lot of touring with Tim and his band, Kudzu Wish. He was an incredibly genuine, wonderful, talented person and that's why he had so many people around to help him out when he was diagnosed. With all of the recent attention on ALS lately I've been thinking about the guy a lot. If you'd like to see what someone struggling with ALS has to go through you should check out the documentary on Youtube called "Often Awesome". You can also view it here and, if you can, please donate to help ALS research and finding a cure: http://www.allacesmedia.com/oftenawesome…
It's an incredibly heart wrenching series, but I think it's really important for people to really see how much this disease breaks someone down, even someone a strong as Tim. It's also wonderful to see how much Tim was loved. RIP, Tim.
I grew up playing music in NC and did a lot of touring with Tim and his band, Kudzu Wish. He was an incredibly genuine, wonderful, talented person and that's why he had so many people around to help him out when he was diagnosed. With all of the recent attention on ALS lately I've been thinking about the guy a lot. If you'd like to see what someone struggling with ALS has to go through you should check out the documentary on Youtube called "Often Awesome". You can also view it here and, if you can, please donate to help ALS research and finding a cure: http://www.allacesmedia.com/oftenawesome…
It's an incredibly heart wrenching series, but I think it's really important for people to really see how much this disease breaks someone down, even someone a strong as Tim. It's also wonderful to see how much Tim was loved. RIP, Tim.
http://www.nature.com/nature/journal/vao…
Rest in peace, Tim.
ALS is considered an "orphan disease," however, affecting about 2 out of every 100,000 people, so developing drugs or other treatment modalities to modify a complex chain of events will not attract pharmaceutical companies—the profits aren't there.
Private donations and government research funding are essential.
And obviously I didn't now Tim LaFollette either, but my sympathies to his friends and family in case they're reading this. He wrote a good song; I'm going to check out some of his & the Popover's other stuff.
http://mpkb.org and
http://mpkb.org/home/diseases/als
for details.
The treatment is an off lable usage of a blood pressure medication to activate the Vitamin D receptor and activate the Th1 component of the inate immune system combined with pulsed antibiotics to clear the protiens which block the receptor, enabling cell wall deficent bacteria and other microbes to live as intracellular parasites.
The treatment successfully completed phase 2 trials under the supervision of the FDA for the treatment of Chronic Fatigue Syndrome, Fybromialga, Chronic Lyme Disease, and Sarcoidosis, though many other conditions respond to treatment as well. The strains of bacteria that are theorised to casue ALS are more virulent than in those implicated in other condidionts, but still respond to treatment.
Thanks Dan!
Is there a way to set up a donation fund for the family? Unless I misremember, they were having trouble with all the medical bills and such.
@34 Looking around the oftenawesome.org page, it looks like donations (http://army.oftenawesome.org/content/don…) were set up in his wife Kaylan's name. I imagine that will still get where it needs to go.
we have been walking in your same shoes . I'm part of a Hospice support group now trying to put my life back together the best way I can. Both our sons, Rick and Brian have really been struggling as well, and there is no easy way to get through this. I do get some peace in knowing that both Dick and Tim are now at peace, and free from the horrors of ALS. Please, feel free to call me or e-mail if you get to the point where you think it might help you. Just know you are not alone in your pain, and time does help to bring some relief. You are a very strong person, Kayla, and this strength will carry you through this. God bless, and know our prayers are with you all.
Our Love, Jan
E-mail jangallimore1@yahoo.com
http://www.youtube.com/user/AllAcesMehtt…
http://www.youtube.com/user/AllAcesMehtt…
http://www.youtube.com/user/AllAcesMehtt…
I am one of the producers of the web series that documented Tim's battle with ALS. Please watch, educate and share with all. Tim and Kaylan showed the world how beautiful people can be. Thanks Dan,
Andy Coon
http://oftenawesome.com
It's an incredibly heart wrenching series, but I think it's really important for people to really see how much this disease breaks someone down, even someone a strong as Tim. It's also wonderful to see how much Tim was loved. RIP, Tim.
It's an incredibly heart wrenching series, but I think it's really important for people to really see how much this disease breaks someone down, even someone a strong as Tim. It's also wonderful to see how much Tim was loved. RIP, Tim.