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ALS

John Cougar Lunchbucket May 05 2009 08:08 AM

OK, as some people may know, my sister was diagnosed with Lou Gehrig's disease last year. She's less than 2 years older than me, a big Mets fan also, has 3 young kids, and is the only halfway normal relative I've ever had, so it's a complete shock and tragedy. I've only recently learned what she's up against. ALS is a pretty mysterious affliction that affects the motor nuerons and makes muscles unable to fire, grow weak and atrophy. It started for her innocently enough as an inability to get a proper lift on one foot and has progressed from there. It is diagnosed only after all other possible explanations are ruled out. It is also known as Lou Gehrig's disease, which ironically, affected Lou Gehrig. There is no known cure and the disease is ultimately fatal but it affects and progresses differently in every case. There are various drugs and treatments that have shown promise in slowing down the progression and ways to improve the lives of those affected. She's getting good help from Johns Hopkins and her family. Later this month (May 16) I'll be participating in the Walk to Defeat ALS at Hudson River Park. Since I only just found out about this event, I set a very modest fundraising goal for my "team" Meet the Jens, and would be happy if any of you could either participate in the walk with me (it's a modest 3.5 mile stroll) and/or make a contribution. You can do that here if you like. There will be other events in the coming months including for the first time a MLB-focused one over the July 4 weekend.

metirish May 05 2009 08:50 AM

A worthy cause. Sorry about your Sister and I wish her and her family the best.

themetfairy May 05 2009 09:10 AM

I'm in. Best of luck to your sister - I hope she beats this monster!

cooby May 06 2009 07:24 PM

Best wishes to your sister, Jon, and on a side note, you're a great brother :) I'll be making my contribution this weekend.

Mets Guy in Michigan May 06 2009 10:48 PM

Count me in! Be brave.

Rockin' Doc May 07 2009 05:05 AM

I was happy to make a small contribution in honor of Louise, the wife of my father's best friend since high school. She unfortunately passed away with ALS a few years ago. I wish JCL's sister and her family all the best in the battle against this terrible disease. My prayers are with all of you.

John Cougar Lunchbucket May 07 2009 07:29 AM

You guys rock.

Gwreck May 07 2009 08:44 AM

Best wishes to your sister and your family in this difficult time.

G-Fafif May 07 2009 01:45 PM

Walk hard!

A Boy Named Seo May 07 2009 02:28 PM

My very best to your sis, man.

d'Kong76 May 07 2009 04:23 PM

ALS is really a scary freakin' thing. I registered to walk, I'll try and get some support from the co-workers.

d'Kong76 May 08 2009 12:44 PM

Lbucket, can you email me or PM a good email address for you? I tried two and they're not working. Thx.

Edgy MD May 08 2009 12:51 PM

I'm in.

John Cougar Lunchbucket May 17 2009 12:48 PM

Hey you guys were great! We wound up raising nearly 2000 bucks in less than 2 weeks. Special special thanks to Kong 76 who came along with us and put up with a walking crew that included 2 3-year-olds!

d'Kong76 May 19 2009 06:41 PM

Parents always think their kids are a pain, but those two three-year-oldn's did great and it was a pleasure to spend a few hours with your family. Shoot, Lunchjr ran 70%, only grumped 10%, and got to get pushed in a stroller 20% ... that's a pretty good job for 3 1/2 miles!

John Cougar Lunchbucket Feb 27 2010 06:08 PM Re: ALS

Hey we are doing the Walk for ALS event again this year, and trying for a bigger crowd and more $$ with more preparation. Feel free to come hang out that day, we'll get some beers after or something. If you wish you can make a contribution at the below link or "join the team" and raise a few a la KC last year. [url]http://web.alsa.org/site/TR/Walks/GreaterNewYorkWalk?px=2245031&pg=personal&fr_id=6418 My sister in the meantime started writing about her condition here, it is revealing about what it's like to have ALS. [url]http://jensalsjourney.wordpress.com/

d'Kong76 Feb 28 2010 10:30 AM Re: ALS

If anyone would like to consider sponsoring walkers in addition to JCL, I've also created a page to collect from non-forum friends, co-workers, etc. Thanks ... http://web.alsa.org/site/TR/Walks/Great ... fr_id=6418

Valadius Feb 28 2010 11:43 AM Re: ALS

I would love to help. My grandfather succumbed to ALS thirteen years ago.

d'Kong76 Feb 28 2010 12:47 PM Re: ALS

Break out the platinum card, Valad ... point, click, and submit lol!

John Cougar Lunchbucket Mar 26 2010 09:53 AM Re: ALS

My sis is keeping a blog now, interesting stuff even I didn't know... Here’s the thing about having an untreatable, incurable disease: they can’t do anything for you. So taking part in a study at least makes you feel like you’re actually doing something. You know the breakthrough may come too late to help you personally. You understand you might get the placebo. But at least you are doing something so that maybe some other person in the future won’t have to go through this. [url]http://jensalsjourney.wordpress.com/ Meantime if you'd like to contribute or walk with us here's a link for that. [url]http://web.alsa.org/site/TR/Walks/GreaterNewYorkWalk?px=2245031&pg=personal&fr_id=6418

Fman99 Mar 26 2010 10:22 AM Re: ALS

I was just reading her blog, your sister is an amazing person. Having small children myself, I shudder to think of how my family would handle this if it happened to my wife or I. I just threw a few bucks your way JCL.

John Cougar Lunchbucket Mar 26 2010 10:27 AM Re: ALS

Thanks, man!

Rockin' Doc Apr 02 2010 02:07 PM Re: ALS

Proud to support you in your fundraising for this worthy cause. My thoughts and prayers will be with your sister Jen and all her family and loved ones.

John Cougar Lunchbucket Apr 28 2010 02:58 PM Re: ALS

Wanna say thanks to all you folks who contributed big and small, especially KC who's a fucking animal with this shit. I got a thrill today when someone I didn't even know contributed to the effort after I proposed free copies of the MBTN book for contributions over $30. I hate asking people I know for stuff!

themetfairy Apr 28 2010 03:13 PM Re: ALS

WTG! Best of luck with the walk. Let us know how it goes at Two Boots on the 18th.

d'Kong76 Apr 28 2010 07:17 PM Re: ALS

John Cougar Lunchbucket wrote: Wanna say thanks to all you folks who contributed big and small, especially KC who's a fucking animal with this shit. It's all from people at work, they totally rock! Looking forward to The Walk.

John Cougar Lunchbucket Apr 28 2010 07:42 PM Re: ALS

At this rate we can reach 10 grand, which IIRC was the most any team raised last year. We're 8something already, up from 2 grand last year!

d'Kong76 Apr 28 2010 08:15 PM Re: ALS

It's all from people at work, they totally rock! Ooops, and metfairy too.

themetfairy May 03 2010 06:11 PM Re: ALS

I decided that there are worse ways to spend a Saturday morning than to walk with friends and help raise awareness for a worthy cause. I'm in!

John Cougar Lunchbucket May 03 2010 06:57 PM Re: ALS

Wow, that's great. I'm glad I didn't already order t-shirts!

themetfairy May 03 2010 06:58 PM Re: ALS

I get a shirt? Cool!

Edgy MD May 04 2010 08:10 PM Re: ALS

My money is on the table. If you don't complete that course, I'll kick your ass.

John Cougar Lunchbucket May 04 2010 08:22 PM Re: ALS

You guys are great. Limited edition T-shirts have been ordered!

themetfairy May 13 2010 11:07 AM Re: ALS

What are the logistics on Saturday? Do we have to check in individually, or will you be checking in for the team? Will the team be walking together?

John Cougar Lunchbucket May 13 2010 11:37 AM Re: ALS

Yes, I will get all the deets together on an email tonite, but basically, arrive at the starting point at the appointed time (I think 11 am, don't quote me). There are some words from Ken Dashow of Q104.3 (Rock Lives, ect), introduction of the guests, etc, and then, well, it's just a walk. So you will see me and others there. My sis, her family and a many of her friends from LI will be there this year, should be a big group as opposed to last year. There is food and stuff available at the end of the walk, and if its the same as last year, the 9th Avenue Food Festival will be going on for post-walk revelry (that's a street fair on 9th Avenue, natch). I'd be happy to buy all my friends a beer afterward! I am pretty sure in fact we will have more walkers than t-shirts so to be safe, wear a blue shirt if you can so you fit in with the team whether or not we get you a shirt there -- and we can always get more shirts after the event if we run out. You should get a free ALS walk t shirt.

themetfairy May 13 2010 12:21 PM Re: ALS

And where am I going to find a blue shirt? (Oh wait - I've got one or two....). It all sounds good :)

d'Kong76 May 13 2010 06:35 PM Re: ALS

Looking forward to it, weather should be perfect.

A Boy Named Seo May 14 2010 09:03 AM Re: ALS

I just pitched in a few bucks, man. Better late than never. Here's to a successful event this weekend and progress very soon down the road in kicking this thing's ass.

themetfairy May 14 2010 10:03 AM Re: ALS

The fundraising goal for the team was $5.000, and they're almost up to $12,500! Meet the Jens kicks ass!

Rockin' Doc May 15 2010 12:26 PM Re: ALS

A great job by JCL and all the others that put forth such a successful effort for this worthy cause. I was proud to contribute and wish I could have been there to walk with you. I ran at the gym today and timed it so I started at 11:00 AM this morning. That way I felt I was with all of you in spirit.

John Cougar Lunchbucket May 15 2010 12:50 PM Re: ALS

Thanks Doc. It was a nice day to be outside! Pics soon.

themetfairy May 15 2010 01:55 PM Re: ALS

Lunchpail and his cousin are the cutest ALS stompers ever!

d'Kong76 May 15 2010 02:53 PM Re: ALS

Lovely day, looking forward to seeing lotsa pictures.

John Cougar Lunchbucket May 15 2010 05:24 PM Re: ALS

themetfairy wrote: Lunchpail and his cousin are the cutest ALS stompers ever! Boy I love this shot.

Edgy MD May 15 2010 06:22 PM Re: ALS

John Cougar Lunchbucket wrote: There are some words from Ken Dashow of Q104.3 (Rock Lives, ect), introduction of the guests, etc, and then, well, it's just a walk. Wow, the Dasher is still bringing it. Great shot. Wish I was four again.

John Cougar Lunchbucket May 15 2010 06:30 PM Re: ALS

I met Ken today and can tell you he's a Met Lovin Big Shot.

Edgy MD May 15 2010 07:12 PM Re: ALS

You gave him an invite, naturally, right?

LeiterWagnerFasterStrongr May 15 2010 08:14 PM Re: ALS

Aw, Lunchpail. Glad that the weather smiled on you.

themetfairy May 15 2010 09:31 PM Re: ALS

John Cougar Lunchbucket wrote: themetfairy wrote: Lunchpail and his cousin are the cutest ALS stompers ever! Boy I love this shot. Thanks. It helps to have such adorable subjects.

Edgy MD May 17 2010 08:49 AM Re: ALS

John Cougar Lunchbucket May 17 2010 09:21 AM Re: ALS

He wore that makeup for the rest of the day, and when people came up to him and said, "Hey, Spiderman!" he said, "I'm not the real Spderman."

metirish May 24 2010 10:49 AM Re: ALS

Cool story here http://www.friendsofjeff.com/Jeff.htm

Edgy MD May 24 2010 10:50 AM Re: ALS

Wow, he's still active 27 years after diagnoisis. That's great.

metirish May 24 2010 10:53 AM Re: ALS

Edgy DC wrote: Wow, he's still active 27 years after diagnoisis. That's great. I know right? , I found him in an article in the Irish Times about Kiss.... http://www.irishtimes.com/newspaper/mag ... 35967.html

Edgy MD May 24 2010 10:55 AM Re: ALS

And Kiss is still active 27 years after they were diagnosed as sucky.

metirish May 24 2010 10:56 AM Re: ALS

Edgy DC wrote: And Kiss is still active 27 years after they were diagnosed as sucky. LOL.....

Mets Guy in Michigan May 26 2010 07:37 AM Re: ALS

That's a cool story! (And I like Kiss.)

Edgy MD May 26 2010 08:04 AM Re: ALS

Yeah, but the 1983 edition?

Mets Guy in Michigan May 26 2010 08:18 AM Re: ALS

Hey, "Lick it Up" is actually one of their better albums!

DocTee Jun 06 2010 02:12 PM Re: ALS

Here's an inspiring story about a Bay Area cocahing legend who just succumbed to ALS-- more than three decades after his initial diagnosis. [url]http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2010/06/06/SPGO1DQM26.DTL

John Cougar Lunchbucket May 06 2011 08:45 AM Re: ALS

Hey you guys prolly know this already, but tomorrow me (and Chad Ochoseis) and a buncha others including the guys I ran Jr. High cross country with, are running in the Fiesta 5K in Baltimore to support the Packard Center for ALS Research at Johns Hopkins, where my sis has been getting treatment for 3 years now. She's exhibiting all the symptoms of someone diagnosed with ALS for as long as she has, near total paralysis and increasing difficulties breathing/swallowing etc. It's a completely vicious disease. One of our neighbors in fact just had a friend of their diagnosed, a 40-year-old triathlete, it sucks. One of the things I learned about being involved in raising funds for ALS is that "rare" diseases get relatively little support because there's no money in it for the big drug companie$, who find advertising for victims of erectile dysfunction and twitchy knee syndrome infinitely more profitable. The Packard Ctr relies completely on donations to make it go and are on the leading edge of research. If you want you can donate to our team here [url]http://support.alscenter.org/site/TR/Runs/2011Fiesta?px=1114122&pg=personal&fr_id=1090 and Uncle Sam will let you deduct it. No pressure, with Japan, Tug McGraw, Soup Kitchens and all the other the other stuff all worthy of our support I feel like I'm doing some good just to let you know.

Mets Guy in Michigan May 08 2011 07:16 PM Re: ALS

Good for you, Lunchbucket! One of my co-workers just had to retire early as the symptoms were starting. She's taking part in a study, and the newsroom raised more than $700 for the cause -- by far the most we've raised for anything. She's a very special lady, and we miss her already.

John Cougar Lunchbucket Jul 06 2011 11:59 AM Re: ALS

As some of you know from fb, Jen passed away this morning at age 46. We just spent the weekend down there with her and her family, came home yesterday. It was plainly obvious she was not doing well but that she passed so spoon was something of a shock. I have to say, ALS really sucks and I'm glad she and her family won't have to deal with it directly anymore. Just sorry it came around in the first place.

Edgy MD Jul 06 2011 12:05 PM Re: ALS

Christ. Awful.

themetfairy Jul 06 2011 12:10 PM Re: ALS

My condolences Lunchie. I only had the chance to meet Jen in person that one time, but I followed her blog and knew her on Facebook. She was a truly special lady with a wonderful sense of humor and outlook on life; it was an honor to know her.

TransMonk Jul 06 2011 12:41 PM Re: ALS

I'm sorry for your loss, Lunchie. My thoughts are with you and your family.

Willets Point Jul 06 2011 01:06 PM Re: ALS

My condolences, Jon. My father died at the same age (he had MS not ALS but either way it's far too young). I hope all the work you & your family did that's detailed in this thread will make a change for other people suffering from the disease.

G-Fafif Jul 06 2011 01:50 PM Re: ALS

So sorry. Deepest condolences to you and your entire family.

smg58 Jul 06 2011 01:58 PM Re: ALS

My deepest condolences, that is very sad news.

Mets Guy in Michigan Jul 06 2011 02:37 PM Re: ALS

Jon, I'm so sorry to hear this news. Peace, strength and comfort to you.

Edgy MD Jul 06 2011 04:38 PM Re: ALS

And, of course, condolences to Biker Bill, also.

Benjamin Grimm Jul 06 2011 05:10 PM Re: ALS

My condolences too. I'm sorry to hear the news.

Frayed Knot Jul 06 2011 05:19 PM Re: ALS

Jennifer Lee Springer Dills 1964-2011 w/ Juliet and Audrey She was the nicest person I ever knew.

metirish Jul 06 2011 05:25 PM Re: ALS

Sincere condolences to you both and your families.

Rockin' Doc Jul 06 2011 07:08 PM Re: ALS

My sincerest condolences to both Bill and Jon. My thoughts and prayers are with each of you and your family.

seawolf17 Jul 06 2011 07:20 PM Re: ALS

This hurts to see, JCL. Even though I guess, in reality, you had to know this day would come... it still sucks. My fondest thoughts go out to you and your family at this difficult time; I'm glad you got to spend some time with her recently.

Gwreck Jul 06 2011 10:13 PM Re: ALS

Very sorry to hear this. All the best to Lunchbucket and Frayed Knot and your family.

Centerfield Jul 07 2011 08:21 AM Re: ALS

Strength to the two of you guys and your family during this time. I don't have the words.

seawolf17 Jul 07 2011 08:51 AM Re: ALS

How did I not know that FK and JCL were related?

Centerfield Jul 11 2011 12:06 PM Re: ALS

A friend of mine's father has recently been diagnosed. He is a lifelong Yankee fan (the whole family is) and on Saturday, he threw out the first pitch at Yankee Stadium. He watched the game in a luxury box with his family (kids and grandkids). Watched Jeter hit 3000, then saw the Yankees win on a Jeter single in the 8th. You will forgive me for rooting for the Yankees for just one day.

seawolf17 Jul 11 2011 12:15 PM Re: ALS

No. We'll forgive you for going to a game and supporting a friend and his family, but we will NOT forgive you for rooting for the Yankees.

Centerfield Jul 11 2011 01:53 PM Re: ALS

I didn't actually go to the game, but point taken.

Edgy MD Jul 11 2011 01:55 PM Re: ALS

Yankees 1, Terminal Illness 0 is a perfectly wonderful score, and I don't begrudge anybody for celebrating if it gives a sick man joy. Unless they're playing the Mets.

cooby Aug 01 2011 07:43 PM Re: ALS

John Cougar Lunchbucket wrote: As some of you know from fb, Jen passed away this morning at age 46. We just spent the weekend down there with her and her family, came home yesterday. It was plainly obvious she was not doing well but that she passed so spoon was something of a shock. I have to say, ALS really sucks and I'm glad she and her family won't have to deal with it directly anymore. Just sorry it came around in the first place. So sorry Jon. What a brave girl she was.

batmagadanleadoff Aug 12 2011 11:48 AM Re: ALS

cooby wrote: John Cougar Lunchbucket wrote: As some of you know from fb, Jen passed away this morning at age 46. We just spent the weekend down there with her and her family, came home yesterday. It was plainly obvious she was not doing well but that she passed so spoon was something of a shock. I have to say, ALS really sucks and I'm glad she and her family won't have to deal with it directly anymore. Just sorry it came around in the first place. So sorry Jon. What a brave girl she was. So sorry to read this. My condolences.

Edgy MD Aug 21 2011 08:04 PM Re: ALS

All you who've worked for and donated to the cause, congratulate yourselves, as there's been something of a breakthrough.

Centerfield Sep 07 2011 01:05 PM Re: ALS

Just seeing this for the first time. I can't believe this is not bigger news.

John Cougar Lunchbucket Feb 05 2012 10:22 AM Re: ALS

2 of Jen's daughters (my nieces) are in this video. I'm all sniffy. [youtube:2wzyyugd]0k6B-S4l-sw[/youtube:2wzyyugd]

themetfairy Feb 05 2012 10:32 AM Re: ALS

John Cougar Lunchbucket wrote: 2 of Jen's daughters (my nieces) are in this video. I'm all sniffy. [youtube]0k6B-S4l-sw[/youtube] Girls on the Run is a great organization. I did a 5K with a bunch of them last fall, and it was wonderful seeing these young women accomplishing so much at a young age; it does amazing things for their self esteem. I'm glad that your nieces are involved in it.

Edgy MD Feb 05 2012 11:57 AM Re: ALS

Great stuff.