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p.s. I am giving it my all- up at 6am, bed at midnight and all day doing paperwork, research, website, 501 c-3 application, connecting via email, phone, meetings, etc... and now workiing on brochure. It's a catch-22... I can't get funding to help ALS kids until I have all of these things in place but I can't wait to help! So far, not only have I invested my time, but lots of money and I am not wealthy!

It will be all worth it when I get to hug the kids and families I reach and hopefully, make a little difference in the lives of families living with this horrible disease. I know my family would have benefitted from such a program.

ALS patients like you are the heroes-teaching the rest of us how to live with courage. Everything I do, I do in memory of my husband and his battle.

"The sole purpose of life is to serve humanity." Tolstoy

With gratitude,
Jodi
 
Thank you, Jodi for shedding some light on what you are trying to do. We live quite a ways from PA, so I will just PM you info regarding my son. I'm sure he would enjoy the book.

Good luck with this. Kids are really left hanging in this situation! Our local ALS doesn't offer anything and in fact sent a book about a boy with cancer. That was their response to his need for help in understanding what his dad is going through. He was left confused, as was I.
 
also, does your school system offer a support group? Ours did. If not, request one~! There are, I am sure, other kids who would also benefit.
 
Dear Sequoia,

Could you please tell me the exact name of the ALS Association that you mentioned? I would like to contact them tomorrow.

Thank you kindly!

Jodi
 
and the ALS Association in PA has a kid's kit.... one they give to their families.... want me to see if I can get one to you?
 
Dear Sequoia,

Could you please tell me the exact name of the ALS Association that you mentioned? I would like to contact them tomorrow.

Thank you kindly!

Jodi
 
If you send me a private message with your email address I will forward their news letter to you. Good Luck!
 
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