The ALS Awareness Project

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I think this was the final product. However, the work is just beginning. Phase 2 is mass distribution.
 

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Kim --- I just shared the document with our local ALS Association director. Great work!!!
 
Thank you.....my thank you button disappeared!!!!
Cool.

I'm heading to upstate NY to the Champlain Valley area (Adirondacks) in a couple of weeks. That is a cluster area for ALS. I'll take the document on my jump drive and who knows? Maybe somebody will be our champion up there.
 
I just finished reading final draft and want to thank you Kim, Tillie and everyone who contributed. I am sure it will help many people and it was so well done.
 
The final draft might not be the finished project. The document is being read by Dr. Michael Pulley, Medical Director of University of Florida ALS Clinic in Jacksonville. He asked me to give him a couple of days to look it over and he would make suggestions. I'm hoping he will write something personal drawing on his human experience as an ALS specialist. I'll let you know if he decides to submit anything.

Meanwhile, it's in the hands of over 1,000 doctors at Florida Health Care and made its way to Buffalo, New York to a large group of physical therapists.
 
Great job Kim! May I share a copy with my PALS neuro? Or, would you prefer that I wait until the final draft? Or, you may prefer to find ways of distribution yourself, and I would definitely respect that. It is a FANTASTIC educational tool, and full of heartfelt, real-life experiences. I want to make sure it "gets out there" and is seen by as many people as possible! Blessings to you (& Tillie) for doing this!!
 
Yes, by all means distribute it! I suspect others will want to add to it but it seems to draw positive attention and awareness in its present form.

The real thanks goes to those people who were willing to share their stories/lives with me. The interviews were heartbreaking and I hope the human component is very apparent when the document is read.

My local neuro is asking for it on a jump drive so he can distribute it to all his staff for "required reading."
 
I'm trying to build a web site to place the document on so I can give links to it. I'm using Blogspots because it's supposed to be easy. I'm a CPA, not a web page designer so I'm very frustrated at the moment. But it will be the next step. I'd love it to look like Eric Valor's blog so I may end up hiring someone to design it for me. We need more awareness and training! We need more fundraising in my area....Lord knows we have enough PALS and not enough resources.
 
Thank you so much for this. I will pass it on to my family. It is painful and distressing to read but very useful. Thank you.
 
If anyone is on Facebook, look for The ALS Project and join. It is there, too. If you can get your friends to join, they will learn more about ALS and we will have to do less teaching.
 
This is AWESOME Kim! I will share this with Dr. Bedlack at Duke, John Hopkins ALS Clinic, and our local ALS chapter. I will also join the facebook group.

Thank you for doing this.

-Nikki
 
What I've been doing is printing out a few copies and taking them to my doctor's appointments, including dentists, GPs, etc. I also have it on a jump drive so if they want more copies they have the file.
 
Someone I went to college with has agreed to distribute it in Orlando. If you're on Facebook, join our "ALS Project" group. That way you will have access to the final document and can share it in other groups.
 
I am glad to be part of the Facebook group because I hope to share the final product too. I have shared the draft with others who said it was really helpful to them in understanding this.
 
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