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Brother

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Hi,

I really don't know where to put this post. While looking for possible sources to get financial help for my sister, Marsha, I came across a grant writing course that appealed to me, so I signed up.

The instructors would like us to have an actual project to work on that may actually see daylight.

Naturally I thought of Marsha and ALS. Those of you that know me know how green I am. I need to come up with an idea ... an unmet need ASAP -- the course has already started.

I'm hoping we can brainstorm here, together, for up to a week (I don't want to fall behind) and come up with a project. Some of you might even to appeal to acquaintances involved in ALS for their ideas ... you know ... those real pro-active go-getters. There could be somebody here that already has the perfect project just waiting for someone (me) to start writing a proposal for.

Two points from my first lesson to chew on:

• How do you know who cares?

1. What is the impact your project will have on the issue which you are addressing?
2. Will it contribute to knowledge about an important problem?
3. Can it be replicated in similar environments?
4. Is it transferable to other contexts?

• Six elements that make a project fundable:

1. It has to solve an existing problem.
2. It has to be of reasonable scope.
3. It has to be relevant to the funding organization's concerns and interests.
4. It has to be well planned.
5. It has to be cost effective.
6. It has to deliver measurable results.

Thanks for your consideration.

Paul
 
Im not sure if this is what you are looking for, but I think a HUGE thing that needs to be fixed is in-home care for PALS.
A lot of insurace companies either will provide very few or no hours per week. If there was more help with PALS, everyones lives would improve, PALS and CALS.
Maybe this isnt what you mean...?
 
It is what I am looking for Liz ... we are brainstorming! Quantity of ideas first, then we will evaluate, then we choose. I also prefer to work in a context that I can relate to and CALS is a good idea. The grant doesn't have to be for a new NPO, it t can serve an existing one. All ideas welcome. Thanks for kicking it off Liz!
 
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One brainstorming method I use with my students is to start listing current general problems. Such as Liz said: Insurance companies do not provide enough financial support to PALS. Or, simply -- equipment is too expensive. Or the real ambiguous -- Some people don't know where to start helping. Anything is okay here. You do not have to come up with a specific idea for a proposal.

Then we move to broad solutions: Get insurance companies to provide more support to PALS; make the equipment inexpensive (yes, even if it sounds funny); show people how to start helping. After that we move to specific action ideas.

Either way ... propose a great, or crazy (I like crazy) idea, or post a general problem.
 
I worry about the van.

• Most people don't have access to a wheel chair van - make wheel chair vans more accessible.

I worry about the quality of care if we have to get outside help. Are these minimum wage, outside caregivers specifically trained to deal with PALS?

• Caregivers aren't properly trained - train caregivers.

I worry about Marsha's bucket list. It's empty.

• Pals bucket lists are empty - fill buckets
 
Here is one that is appropriate to our situation right this moment.
My PALS was never told of communication devices that were available to him.
He has gone 6 years with no voice when he couldve been "talking" this whole time.
So I guess this would be something along the lines of doctors being more informed?
 
Just a thought Brother. Joel, our moderator, has a wonderful a website about living with ALS. It has the most comprehensive information written by a person with ALS that I have ever come across. I think Joel has devoted his heart and soul to his project. I wonder if you could do a project with Joel so that all of the work that Joel has done could be passed on to all diagnosed ALS patients? His work needs to live forever and would benefit the ALS community. Just thinking that maybe you two could collaborate.
Laurel
 
Liz, OMG! Doctors don't know everything? How about developing a PALS caregiver certificate course (Is there one already?). This could be replicated. Perhaps, someday, caregivers could get a little extra income from the state with the certificate!

Laurel, that is exactly what I was thinking. I'm green, the course is starting, and I think I need a mentor. I wish I came about taking the course with a purpose in mind, but I didn't, so here we are. Given that time is short, I can't approach all the experienced people and all the usual sources and make introductions. I hope word of this little project gets out just a little. The instructors seem very sharp and are guiding students thru the process to a completed grant. I'm going to write some kind of grant. Together we could make it the right one.
 
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What about some start up funds for a state of the art live-in care facility; even if it started small, the size of a group home you commonly see for adults with developmental disabilities. Picturing a ranch house in a nice neighborhood...combine that with your caregiving certification and you have it staffed. So simple (NOT).
 
Lydia, very cool ... I'd like to get Marsha in that place. However, the scope of this is way over my head. How about doing this in the Grant Writing 2 ;-) ?
Joel, of course I've been to your website!

So far we have ideas on training programs and care facilities. Went to my classroom today. They are moving on to the next lesson! Might as well share my homework assignment:

Complete a single sentence about your project:

The XXX organization requests $XXX for/to______________ because ____________.

Consider:

What it is you need
Why you need it
What makes your plan important
Who the project is going to benefit
The difference between the present reality and the ideal situation that your project will achieve
What funds you will need to get there (approximate OK for the course)

The instructors are pushing that the plan is sustainable, and that it have an impact beyond the local community. There goes the ranch, Lydia :cry:

We are still at the idea stage ... keep them coming:idea:
 
there is ONE facility that houses ALS patients. it was just opened. i believe there are 20 beds. its in Massachusettes.
Too bad that idea wont work, Paul. Ive been hoping for that for a long time.
I do LOVE your idea of specialized training of CALS. I actually wanted to do this myself- start something up to train people- but had no clue where to even start.
Unfortunately, I have no ideas today... sorry
 
there is ONE facility that houses ALS patients. it was just opened. i believe there are 20 beds. its in Massachusettes.

Here's the website for the ALS residence in Massachusetts.

The ALS and MS Green House Residences

Opened in August 2010. The architect that designed it is a PALS himself and is the first official resident of the ALS Residence. He used to be a very active member at Patients Like Me, but we don't see too much of him any more.
 
Liz, keep talking about the training. Since I have a background in training, I am more comfortable with it. The questions we need to ask are will a specialized ALS Caregiver training course fill a real need? Does the current standard caregiver course not fill that need? I can work with this. Develop a course that can be implemented across the country through an organization such as ALSA -- that does not sound crazy at all. I'm green, but I'm mean ... and I need to take this course myself.
 
i think it would definately fill a real need. ALS is affected by so many things like stress and fatigue, and it would be great if people were trained to see these issues, and then know what to do about them. I was, until recently, a professional caregiver. I had never heard of this disease until i met my PALS (other than the name, Lou Gehrigs). Everything that i learned, was from his mom, and from being in the situation.
 
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