Old 04-14-2011, 01:27 AM #1 (permalink)
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Default When will it stop?

I have been a member of this forum for 19 months. My husband is still alive, but so many PALS have lost there battle with this horrible disease, and I am just so angry. What is it going to take to get the world to help us?
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Old 04-14-2011, 01:29 AM #2 (permalink)
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Default Re: When will it stop?

Two more new PALS our age (50) in the Memphis area. This makes 11 guys that grew up with my husband and me. 11. This is just wrong.
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Old 04-14-2011, 09:37 PM #3 (permalink)
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Default Re: When will it stop?

I've lost count...

More and more people know or have known someone with ALS.

As for a cure or treatment...the world has bigger fish to fry. As you know, there are more lucrative diseases to pursue for a cure or treatment. But, i am hopeful.

Y'all hang in there!

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Old 04-14-2011, 10:00 PM #4 (permalink)
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Default Re: When will it stop?

this tread has good hope its titled "new research i'm hopefull stephen davis replied to my email"
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Old 04-15-2011, 08:56 PM #5 (permalink)
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Default Re: When will it stop?

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Originally Posted by sadiemae View Post
I have been a member of this forum for 19 months. My husband is still alive, but so many PALS have lost there battle with this horrible disease, and I am just so angry. What is it going to take to get the world to help us?
I'm with you! I've emailed Oprah, Ellen, Dr. Oz...the list goes on. Begging them to lend a voice to raise awareness. There needs to be a stronghold of celebrities to give a voice for us. Just like Elizabeth Taylor did for AIDS. Its senseless to send space shuttles up when we have the worst disease without funding for a cure! What is wrong with our country?

Hugs
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Old 04-16-2011, 02:23 PM #6 (permalink)
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Default Re: When will it stop?

"They" say this is an orphjan disease; but why do we see the numberss increasding daily?
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Old 04-16-2011, 05:38 PM #7 (permalink)
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Default Re: When will it stop?

I agree that our best hope is to raise awareness....look what Jerry Lewis did for M.D.

In this mired morass of politics that goes with the economy, I don't hold out much hope for new research funding. The NIH and the CDC are fighting for the survival of their current budgets and programs; let alone starting a new initiative.

We need to find a popular celebrity whose life has been touched by ALS. We need our own Michael Fox.

- Jerry
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Old 04-16-2011, 06:59 PM #8 (permalink)
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Default Re: When will it stop?

Ben Stiller does alot for ALS.
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Old 04-16-2011, 07:56 PM #9 (permalink)
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Default Re: When will it stop?

I agree...I have contacted Ellen, Oprah among others numerous times. Isn't it Bob Sagget who's sister has ALS? I think I remember hearing that.
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Old 04-16-2011, 08:22 PM #10 (permalink)
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Default Re: When will it stop?

Bob Saget's sister died of scleroderma. He made a movie, For Hope, based on her life and her struggle.
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Old 04-18-2011, 12:39 AM #11 (permalink)
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Default Re: When will it stop?

Our church is now starting a "Cancer Day" and it feels like a slap in the face. There are soo many things for Cancer, but oh soo few for ALS, and yet there are 2 people in our church who have ALS and it affects several families in our church. Makes me angry to be honest.
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Old 04-18-2011, 09:37 AM #12 (permalink)
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Default Re: When will it stop?

you are absolutely entitled to be angry about this. it's not fair for somone who had everything to live for to be robbed of their life. My father hasn't been able to enjoy his life for over a year now. He hasn't driven in that period of time and it has severely limited his socialization.

He was so active in the community and I feel he is getting so discouraged not being able to do things like eat before his food gets cold or lift his arms high enough to brush his own hair.

Its not only a loss for the person with ALS but for their family and friends too we are suffering from the disease in a different aspect but we are still effected by it. Somtimes I hold a pillow over my face and scream into it when I get so angry and frustrated. It also helps writing things down to get them out of your mind because talking to other ALS caregivers isn't always enough because the disease proceeds in different ways for everyone.

Just know that you have people here to listen to your frustration and happy moments. We need to support one another. *hugs*
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Old 04-18-2011, 09:46 AM #13 (permalink)
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Default Re: When will it stop?

Quote:
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I agree...I have contacted Ellen, Oprah among others numerous times. Isn't it Bob Sagget who's sister has ALS? I think I remember hearing that.
Bob saget's sister passed away from scleroderma...so thats what bob saget is raising awareness for. Anyhow, I agree with all of you, and even tho iv'e been a pain in the a$$ at times on this forum, I've learned alot and sympathize for you. And also admire how strong some of you are.

Iv'e made a donation towards this terrible disease, with hopes that with even my extra little bucks here and there... will make a difference.
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Old 04-18-2011, 12:37 PM #14 (permalink)
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Default Re: When will it stop?

Hugh Laurie's mom had ALS. He does not do anything for ALS.
Ben Stiller and his wife do a lot. They are big supporter's of Project ALS. They are friends with the Estee's.
Julian Margoles (SP) is a big supporter also. John Hamm and Ed Norton have got involved with event's also.
Chris Lambton from the Bachlorette has become one of our biggest supporters.
He was runner up on the bachlorette, he turned down being the bachelor. He always wore shirts, talked about his mom, does event's. He is a super duper nice guy. He would be an amazing national promoter.
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Old 04-18-2011, 01:17 PM #15 (permalink)
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Hugh Laurie's mom had ALS. He does not do anything for ALS.
Ben Stiller and his wife do a lot. They are big supporter's of Project ALS. They are friends with the Estee's.
Julian Margoles (SP) is a big supporter also. John Hamm and Ed Norton have got involved with event's also.
Chris Lambton from the Bachlorette has become one of our biggest supporters.
He was runner up on the bachlorette, he turned down being the bachelor. He always wore shirts, talked about his mom, does event's. He is a super duper nice guy. He would be an amazing national promoter.
Wow, I never realized how many celebreties really are involved. Its' great, but still not good enough. I personally do not have als, or know anyone that does, but since my fear of it got the best of me (thanks to dr g88gle!) I have become aware of the REAL symptoms... and the severity of this disease...and really the lack of acknowledgement of the disease. Now I just try to get newbies out of here who are in the same spot I was not too long ago. I really hope a cure is found soon, and again you folks (pals, cals and supporters) ... are so very courageous and strong.
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