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It's a great way to raise awareness and fund. You don't have to do it nor donate, but every person that I know that has taken the challenge , including me, has donated. Our firm donated 1k per employee who participated, everyone did. We also challenged surgeons and docs to do the same. I don't see how this can be negative, and everyone had fun to add.
On our evening news there was a representative of the local ALS clinic....clarifying that NONE of the considerable funds being raised by the Ice Water Challenge ...... goes to provide direct patient services on the local level. It is all directed to the National ALS organization.....and that is not shared with local ALS clinics(at least not in Florida....I think the same in other states but I don't know that for certain).
So the challenge is doing a great job of fund raising for research and for public awareness on the national level....it is doing zero for patient services locally.
In fact it is making it harder for local agency to raise funds for its services to patients in Florida....because people who do the challenge believe....."I already gave." In this way actual service provision may be hurt for today's patients and families. Research is the long range answer....but the money raised should also support services to patients and families....those suffering with the disease.
That money could and in my opinion should also fund the provision of equipment such as vans and computers to assist in speech, home based services--dietary, home health and home maintenance. The needs are great and the cost expensive.
I HOPE SOMEONE CAN CORRECT THIS IF I MISUNDERSTOOD.....but the local rep of the Lee County ALS clinic was the one being interviewed and who provided the above info.
I am not discouraging research or the ice bucket challenge which supports the national organization.....I am just saying money raised in Florida should also support services locally. I remember on the Jerry Lewis telethons that the MD organization also funded patient services on the local level.
On our evening news there was a representative of the local ALS clinic....clarifying that NONE of the considerable funds being raised by the Ice Water Challenge ...... goes to provide direct patient services on the local level. It is all directed to the National ALS organization.....and that is not shared with local ALS clinics(at least not in Florida....I think the same in other states but I don't know that for certain).
So the challenge is doing a great job of fund raising for research and for public awareness on the national level....it is doing zero for patient services locally.
In fact it is making it harder for local agency to raise funds for its services to patients in Florida....because people who do the challenge believe....."I already gave." In this way actual service provision may be hurt for today's patients and families. Research is the long range answer....but the money raised should also support services to patients and families....those suffering with the disease.
That money could and in my opinion should also fund the provision of equipment such as vans and computers to assist in speech, home based services--dietary, home health and home maintenance. The needs are great and the cost expensive.
I HOPE SOMEONE CAN CORRECT THIS IF I MISUNDERSTOOD.....but the local rep of the Lee County ALS clinic was the one being interviewed and who provided the above info.
I am not discouraging research or the ice bucket challenge which supports the national organization.....I am just saying money raised in Florida should also support services locally. I remember on the Jerry Lewis telethons that the MD organization also funded patient services on the local level.
This is from the ALS website. It sounds like a good chunk of their money also goes to services for families who are dealing with ALS.
Our Mission, Vision & Values
OUR VISION
[CENTER]Create a world without ALS[/CENTER] OUR MISSION
[CENTER]Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.[/CENTER] Mission Priorities
Raise the level of awareness of The ALS Association as the leading voice and most trusted source of information about Lou Gehrig’s Disease.
Lead, direct and/or collaborate on global research to understand the disease, develop treatments and ultimately find a cure.
Provide every person with ALS and their families access to high quality, consistent and compassionate support services.
Advance a nationwide advocacy program that increases funding for ALS research, improves patient services and empowers the entire ALS community.
Function as one organization with unity of purpose.
Operate within a business model designed to ensure stability and promote financial strength.
CORE VALUES
People with ALS and their families come first in everything we do.
Scientific credibility and innovation are the hallmarks of our research program.
Commitment to excellence and professionalism are key tenets at all levels of our organization.
We are one team with one vision and one mission working together.
Collaboration and partnership within our organization and with others who share our vision and values are key to sustained success in the fight against ALS.
Integrity, honesty and ethical behavior guide all our endeavors.
Mutual respect is the cornerstone for all our working relationships.
Diversity of ideas, cultures, ethnicities and backgrounds strengthen our efforts.
Financial strength enables us to accomplish our goals.
You can also see on their financials page that last year that 5.1 million went to patient and community services.
Thank you for clarifying that the money does go to support patient and community services.
I was concerned because I follow another thread written by a woman who is experiencing difficulties getting necessary supports for her husband to enable him to continue services at the als clinic he was attending prior to the surgery to install his respirator. (van that can accommodate his respirator); now he is house bound.....she has other service needs...some clinical and some family support.
One cannot argue with their mission and core values....they are "right on". Hopefully the challenge will greatly enhance their capacity to meet the overwhelming need of the patient population.
addendum.......its so confusing.....I wnt on line to try to figure out why I thought I heard the local als clinic say they don't get any benefit from the monies raised by the ice water challenge.....and that does seem to be what they are saying. http://www.winknews.com/Call-for-Act...ity-money-goes They are not complaining but are pointing out that they are independent of the national organization and rec no funds from them.
Thank you for clarifying that the money does go to support patient and community services.
I was concerned because I follow another thread written by a woman who is experiencing difficulties getting necessary supports for her husband to enable him to continue services at the als clinic he was attending prior to the surgery to install his respirator. (van that can accommodate his respirator); now he is house bound.....she has other service needs...some clinical and some family support.
One cannot argue with their mission and core values....they are "right on". Hopefully the challenge will greatly enhance their capacity to meet the overwhelming need of the patient population.
My sister went through the same thing with her husband. He passed away from ALS roughly 12 years ago. Fortunately, he had decent insurance which covered most, but it was still a very difficult time when he was bed-ridden and house bound.
It is a tough situation to be in when you are strapped for cash. Whether it is ALS, Cancer, a broken leg, or just the flu, you need medical attention. Though, when this attention costs a small fortune, what do you do? You try and turn to local organizations for help. Unfortunately, as your news cast pointed out, this donation money has not made it down to the local level. This is not uncommon with organizations. Think of hurricane relief. People donate to multiple charities and it takes months if not years before the money is in the hands of the people needing it. In this case, the money might come in the need of a new treatment discovered. With all this money, they might discover a new vaccine that slows the disease. This vaccine will now become available to the local ALS organizations. It shows that help doesn't always show up in the form of a dollar bill. Unfortunately, for the families having to work through ALS, sometimes a dollar bill is what is needed.
edit... local organizations also do not do research. They treat and care for ALS patients. Without the actual research, all you are doing is putting a band-aid on a cut that will never stop bleeding until you bleed to death. I'd rather see money go to the research to find a cure. Once a cure has been discovered, then money should be donated to the families so that they can receive his cure. That sounds rough to say and read, but I think it is what is needed.
edit... local organizations also do not do research. They treat and care for ALS patients. Without the actual research, all you are doing is putting a band-aid on a cut that will never stop bleeding until you bleed to death. I'd rather see money go to the research to find a cure. Once a cure has been discovered, then money should be donated to the families so that they can receive his cure. That sounds rough to say and read, but I think it is what is needed.
I understand....but still think a dual approach that funds research and provides local level direct services is possible and necessary.
Unfortunately our Congress has cut funding for research.
It's raised a fortune, from what I've only recently learned was an underfunded condition.
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. Thanks for sharing!
Think Nationally but Act Locally
