Ladyinn
Distinguished member
- Joined
- Apr 7, 2010
- Messages
- 398
- Reason
- PALS
- Diagnosis
- 11/2009
- Country
- US
- State
- South Dakota
- City
- Custer
Kay Marie, I understand the frustration that comes with this disease -and how uneducated we are in the area of ALS until we are living with it. I don't disagree that MDA and ALSA should be allocating their funds in a more equitable manner, giving all the motor neuron diseases their fair share. However, maybe they are, without further investigation and study I wonder if the petition is the way to go. Maybe it is.
I am much too new to this disease and the forum to understand the political and burecratical structure to know "what is what." I too live in a "remote" community in South Dakota and have found the ALS Clinic in Rapid City helpful and responsive to my needs. I might be wrong, you probably know better than me, I assume this is a part of ALSA or MDA or both?
I do know that this forum and the people I have met on it have been a blessing to me, and while I don't always agree with some of the posts, I respect peoples' right to express themselves. I am disappointed to see many people who I found helpful and inspirational, leave the forum and go to Facebook. The ability to research old threads on this forum is priceless to me. I have been a Facebook member for some time and am not comfortable posting personal concerns or thoughts there.
I also have seen the wonderful things that Stu and his ALS Guardian Angels can, and are, doing for PALS and CALS. And, as you know I am a supporter and have begun to educate the local community about the disease and Stu's Foundation.
As an ex-CEO of a national non-profit, I know that petitions rarely bring change. Instead they cause a splitting of the base group and a splintering of funds, resulting in no group having the ability to do much good. Is there an ALS patient or a CALS on the board of directors of ALSA or MDA? Who sits on the board at the National level? Who is on the board of Guardian Angels? How does this forum operate? I get the sense it was started in Canada? How is their natonal organization different?
I still have too many unknowns to research before I can support a petition that finds fault with the existing organizations and does not specify or include positive suggestions for change.
At a glance, it comes to getting support for your cause from board members who set the national agenda and have the fiduciary responsibility for how funds are spent.
Bare with me dear friend, stress is not good for any of us, and "let's not throw the baby out with the bath water"- look for the good and keep it. This forum and those who monitor and keep it running are GREAT - This is a foundation to build on -Start a thread with the positive ways to improve the national organization and then put it into a presentation and request an opportunity to meet with the board. Then they might listen.
We need to work together... not split apart and start yet another group.
Hugs to all and a special blessing to those who are in angst.
Diane
I am much too new to this disease and the forum to understand the political and burecratical structure to know "what is what." I too live in a "remote" community in South Dakota and have found the ALS Clinic in Rapid City helpful and responsive to my needs. I might be wrong, you probably know better than me, I assume this is a part of ALSA or MDA or both?
I do know that this forum and the people I have met on it have been a blessing to me, and while I don't always agree with some of the posts, I respect peoples' right to express themselves. I am disappointed to see many people who I found helpful and inspirational, leave the forum and go to Facebook. The ability to research old threads on this forum is priceless to me. I have been a Facebook member for some time and am not comfortable posting personal concerns or thoughts there.
I also have seen the wonderful things that Stu and his ALS Guardian Angels can, and are, doing for PALS and CALS. And, as you know I am a supporter and have begun to educate the local community about the disease and Stu's Foundation.
As an ex-CEO of a national non-profit, I know that petitions rarely bring change. Instead they cause a splitting of the base group and a splintering of funds, resulting in no group having the ability to do much good. Is there an ALS patient or a CALS on the board of directors of ALSA or MDA? Who sits on the board at the National level? Who is on the board of Guardian Angels? How does this forum operate? I get the sense it was started in Canada? How is their natonal organization different?
I still have too many unknowns to research before I can support a petition that finds fault with the existing organizations and does not specify or include positive suggestions for change.
At a glance, it comes to getting support for your cause from board members who set the national agenda and have the fiduciary responsibility for how funds are spent.
Bare with me dear friend, stress is not good for any of us, and "let's not throw the baby out with the bath water"- look for the good and keep it. This forum and those who monitor and keep it running are GREAT - This is a foundation to build on -Start a thread with the positive ways to improve the national organization and then put it into a presentation and request an opportunity to meet with the board. Then they might listen.
We need to work together... not split apart and start yet another group.
Hugs to all and a special blessing to those who are in angst.
Diane