Community Chat

[cody2]

On 8/20/2014 terrier3 said:

On 8/20/2014 NoelSeven said:

On 8/20/2014 occasional rain said:

I believe that a person should donate to a charity that matters to them without needing a publicity stunt, public exposure, or a gimmick. Clearly, these people don't care that much about ALS or they would have donated last year.

The fundraiser is to promote awareness of ALS, first and foremost.

That's a really big deal because most people have no clue what it is. The same is true for other orphan illnesses.

It has done wonders for ALS research - and awareness too.

My cousin died from ALS...she was a mom with 7 children. I was surprised so many posters had a family member of friend with ALS.
It's a horrible disease...luckily my cousin went out on her own terms from pneumonia - she refused a ventilator and died peacefully at home.

I cannot imagine why people are such spoilsports about this campaign....it's original, fun and it's working!!!

Terrier, I am so sorry for any family that has had to deal with ALS on a first hand basis. I am sorry for your loss.

It is also interesting to me that the military has shown a much higher percentage of ALS since the Gulf War. They are now doing studies. I firmly believe that it has something to do with chemicals in the environment that are attacking the nervous system. In the case of the military...chemical warfare. In the case of my mother...spending her entire life living on the ranch in the middle of vegetable fields. I don't suppose I will ever get the answer to this in my lifetime.

Noel, UCSF has a great neurology department. I am sure you already know that. Many of the patients in our support group go there every few months to see an ALS specialist. Not in the hopes of help or a cure but to be a part of studies and research that are being done there. My daughter saw a doctor there for several years regarding her epilepsy. That is a great institution!

[NoelSeven]

On 8/20/2014 cody said:

On 8/20/2014 terrier3 said:

On 8/20/2014 NoelSeven said:

On 8/20/2014 occasional rain said:

I believe that a person should donate to a charity that matters to them without needing a publicity stunt, public exposure, or a gimmick. Clearly, these people don't care that much about ALS or they would have donated last year.

The fundraiser is to promote awareness of ALS, first and foremost.

That's a really big deal because most people have no clue what it is. The same is true for other orphan illnesses.

It has done wonders for ALS research - and awareness too.

My cousin died from ALS...she was a mom with 7 children. I was surprised so many posters had a family member of friend with ALS.
It's a horrible disease...luckily my cousin went out on her own terms from pneumonia - she refused a ventilator and died peacefully at home.

I cannot imagine why people are such spoilsports about this campaign....it's original, fun and it's working!!!

Terrier, I am so sorry for any family that has had to deal with ALS on a first hand basis. I am sorry for your loss.

It is also interesting to me that the military has shown a much higher percentage of ALS since the Gulf War. They are now doing studies. I firmly believe that it has something to do with chemicals in the environment that are attacking the nervous system. In the case of the military...chemical warfare. In the case of my mother...spending her entire life living on the ranch in the middle of vegetable fields. I don't suppose I will ever get the answer to this in my lifetime.

Noel, UCSF has a great neurology department. I am sure you already know that. Many of the patients in our support group go there every few months to see an ALS specialist. Not in the hopes of help or a cure but to be a part of studies and research that are being done there. My daughter saw a doctor there for several years regarding her epilepsy. That is a great institution!

cody, all I have to do is see a mention of UCSF and I am reduced to a puddle.

I have a professional membership in a couple of medical journals/organizations, and so much of the breakthrough research has come from UCSF. One after another!

When I first heard they were building the UCSF Benioff Children's Center & the Oakland Hospital, I jumped at the chance to be a part of it. This year, Benioff saved the life of a baby in our extended family.

[NoelSeven]

cody, you mentioned being a part of a support group. I wasn't aware of that and I don't know what the issue is, but you know I wish you and yours the best of everything.

[cody2]

On 8/20/2014 NoelSeven said:

On 8/20/2014 cody said:

On 8/20/2014 terrier3 said:

On 8/20/2014 NoelSeven said:

On 8/20/2014 occasional rain said:

I believe that a person should donate to a charity that matters to them without needing a publicity stunt, public exposure, or a gimmick. Clearly, these people don't care that much about ALS or they would have donated last year.

The fundraiser is to promote awareness of ALS, first and foremost.

That's a really big deal because most people have no clue what it is. The same is true for other orphan illnesses.

It has done wonders for ALS research - and awareness too.

My cousin died from ALS...she was a mom with 7 children. I was surprised so many posters had a family member of friend with ALS.
It's a horrible disease...luckily my cousin went out on her own terms from pneumonia - she refused a ventilator and died peacefully at home.

I cannot imagine why people are such spoilsports about this campaign....it's original, fun and it's working!!!

Terrier, I am so sorry for any family that has had to deal with ALS on a first hand basis. I am sorry for your loss.

It is also interesting to me that the military has shown a much higher percentage of ALS since the Gulf War. They are now doing studies. I firmly believe that it has something to do with chemicals in the environment that are attacking the nervous system. In the case of the military...chemical warfare. In the case of my mother...spending her entire life living on the ranch in the middle of vegetable fields. I don't suppose I will ever get the answer to this in my lifetime.

Noel, UCSF has a great neurology department. I am sure you already know that. Many of the patients in our support group go there every few months to see an ALS specialist. Not in the hopes of help or a cure but to be a part of studies and research that are being done there. My daughter saw a doctor there for several years regarding her epilepsy. That is a great institution!

cody, all I have to do is see a mention of UCSF and I am reduced to a puddle.

I have a professional membership in a couple of medical journals/organizations, and so much of the breakthrough research has come from UCSF. One after another!

When I first heard they were building the UCSF Benioff Children's Center & the Oakland Hospital, I jumped at the chance to be a part of it. This year, Benioff saved the life of a baby in our extended family.

[cody2]

On 8/20/2014 NoelSeven said:

cody, you mentioned being a part of a support group. I wasn't aware of that and I don't know what the issue is, but you know I wish you and yours the best of everything.

Noel, I was talking about our ALS support group. I no longer go. Frankly, it was depressing. Member constantly passing away and new members coming in. One gets so attached to the patient and their families that come with them. There was never any good news. One felt so helpless.

[NoelSeven]

On 8/20/2014 cody said:

On 8/20/2014 NoelSeven said:

cody, you mentioned being a part of a support group. I wasn't aware of that and I don't know what the issue is, but you know I wish you and yours the best of everything.

Noel, I was talking about our ALS support group. I no longer go. Frankly, it was depressing. Member constantly passing away and new members coming in. One gets so attached to the patient and their families that come with them. There was never any good news. One felt so helpless.

I can well imagine

[makeup addict]

I know a guy at my church that died of ALS. A coworkers brother has it, and another friends brother was diagnosed three years ago. He is rapidly going downhill. He's in his 30's. His parents never thought they would be burying their son. Any way to raise awareness and money for this horrific disease, I'm all for it!

[Lila Belle]

Me, too.

[kittymomNC]

I know I'm getting in late on this, but I just wanted to say that I have a friend who had already lost one son at age 21 in a boating accident, and now she has lost her oldest son to ALS. I know a little about how devastating this can be, and I'm sorry for those posters who have had to deal with it on such a personal level.

It doesn't matter what kind of "gimmick" you have to use to get the donations, that's beside the point. The point is that researchers need the money to fight this horrible illness any way they can get it - from ice water thrown on heads to whatever else someone can come up with.

The American Heart Association (I lost my father at age 56 to a heart attack) or the American Cancer Society (I lost my mother to a brain tumor at age 67) or any other charity can come up with whatever gimmick they want to generate needed money for research. In all cases, when it comes to money to fund research, the end does justify the means.

The lesser known illnesses and charities need all the help they can get. Lung cancer, for instance, is proven to kill so many hundreds of thousands of people every year, but those who are trying to find a cure or better treatments for that are sorely underfunded. I wish someone would come up with a gimmick to generate money for them.

In a nutshell, it matters not how they get the donations, it matters that they get them!

[Lila Belle]

Amen !