Old 07-20-2007, 10:45 AM #1 (permalink)
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Smile To all caregivers...

I'm going to keep posting this until every PALS who is unfairly confined to their homes because they can't afford a wheelchair accessible van, gets one. Every PALS and their family is ENTITLED to have the remainder of their precious time together as limitless as humanly possible. I'm desperately trying to start a nonprofit program that does just that around the entire country. But I can't do this alone nor do I want to. We who are deeply affected by this horrific disease are profoundly changed. Whether you are the PALS, the husband, the caregiver, the hospice volunteer, the DOCTOR, or like me, the daughter who moved home to take care of her slowly withering away father, you come out a different person. Since he has died I have racked my brain away on how I am OBLIGATED to contribute to the cause, and like a bolt of lighting it came to me. I now feel like it is my duty to at least try to do this. I keep telling myself not to be afraid and ask for help, so here I am. If anyone has anything for me please don't hold back. Whether you have experience with fundraisers, nonprofits, know of a similar program, grant writing ideas, comments, words of encouragement - whatever please contact me by PM. Let's get this grassroots movement going!

Kate
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Old 07-20-2007, 12:33 PM #2 (permalink)
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Kate,

Count me in too.

You're right, we are changed by the experience of caring for a person suffering the indignation that comes with ALS. I made it my mission to find ways to preserve Linda's dignity at all costs. What I found to be most true is that it is the lack of knowledge about the disease and how it effects the individual that causes the general public to treat the PALS as if they were mentally impaired just because they were unable to move their own body.

Anyway, I've lots of stories of how Linda and I found ways to keep on living and laughing until the very end. When I've shared some of them over the past months since she died more than once I've been told to write a book. Who knows, perhaps that's how I am supposed to contribute.

Where are you located and what are your ideas?
Jeanne
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Old 07-21-2007, 01:28 PM #3 (permalink)
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Start writing your book! I plan on education being a large segment of my program. I plan on going to schools, bussinesses, community clubs, etc. and educating by telling my experience and and what my Dad's experience was and then hopefully motivating them to sponsor a van or donate $ or even sponsor a fundraiser. I am hoping my passion and sincerity will come across and invoke action. I have the support of my family and friends across the USA. I am in Tiffin, Ohio right now. But I plan on moving back to North Carolina and launching this there.

Kate
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