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Old 09-14-2006, 02:38 PM   #1
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Building ALS Awareness Brick by Brick

August 2006

Where Awareness and Advocacy Continue


When a person or family enters the ALS community we are privileged to meet
all kinds of fascinating people. In this community comes the necessity to
preserve and hold close those new relationships. That was the case this
past week when one of these fascinating PALS stepped back into my life
with an update on his latest project. His name is David Jayne and is the
founder of [http://www.respitematch.com/] RespiteMatch.com

David is an 18 year survivor of ALS, who has vast experience with the ups
and downs of home healthcare. In his personal search for qualified
caregivers he used all mediums, classified newspaper ads, referrals, nanny
services and agencies, but rarely finding appropriate candidates. His
company allows caregivers to list specific healthcare skills,
qualifications and experience while patients can list specific healthcare
skills, qualifications and experience required in their care.

RespiteMatch.com was born from the need to find a comprehensive source on
the Internet for caregivers, nurses, LPN, CNA, mid-wives, physical
therapists, occupational therapists, elder care, and other healthcare
professionals to work in the home setting. RespiteMatch has search
capabilities unparalleled in the industry. Users have the ability to
search for specific healthcare skills or needs.

RespiteMatch offers a wide range of services and features. Visitors can
browse the caregiver or patient profiles. Members can create a profile and
receive notification if their profile is added to another individual’s
MatchList at no charge. Subscribers have full access to all of the
RespiteMatch features and services including MatchList notification, all
contact information, DMV checks, Credit History checks, Criminal History
checks, Employment History checks, Reference Checks and Surety Bonds.

I am excited David contacted ALS March of Faces and we are pleased to
share this valuable and fascinating Web Site.

[http://www.respitematch.com/] RespiteMatch.com

Terry Frank


1 Caregiving is a job and respite is your earned right. Reward
yourself with respite breaks often.

2 Watch out for signs of depression, and don’t delay in getting
professional help when you need it.

3 When people offer to help, accept the offer and suggest specific things
that they can do.

4 Educate yourself about your loved one’s condition and how to communicate
effectively with doctors.

5 There’s a difference between caring and doing. Be open to technologies
and ideas that promote your loved one’s independence.

6 Trust your instincts. Most of the time they’ll lead you in the right

7 Caregivers often do a lot of lifting, pushing, and pulling. Be good to
your back.

8 Grieve for your losses, and then allow yourself to dream new dreams.

9 Seek support from other caregivers. There is great strength in knowing
you are not alone.

10 Stand up for your rights as a caregiver and a citizen.

Car Keys

When I was diagnosed my doctor made a humorous comment to my wife about
having to fight the car keys away from me at some point. I knew this could
be a problem with older folks, but now I was faced with it at an early age.
This turning point is particularly hard to deal with because the ability to
drive represents so much independence. I determined to be gracious about
it. I realized that others would loose confidence in my driving before I
would. When my wife made a few comments I knew it was time to quit. It
must have been hard for her to express her concern because I hadn't
discussed it with her. If I had it to do over I would have asked her from
time to time if she felt safe with my driving to let her know that I was
open to honest feedback.

But good things came out of my not driving. Friends wanted to do something
to help but didn't know how to help. I think that this is a common problem
for friends of PALS. They watch the disease progress and feel helpless. By
letting friends drive me to meetings, movies, shopping, and just out to
coffee I provided a way for them to help, and it strengthened our

God bless you on your journey

Wayne S. Phillips

What is an Advocate?

According to The American Heritage Dictionary, an advocate is one who:


Speaks in favor of or recommends something

Argues for a cause

Is a supporter or defender
- Pleads in another's behalf

To be successful, the advocate must dedicate work to some or all of the
following areas:

- Raising awareness
- Raising money
- Applying political pressure

Recruiting more advocates

All of us with ALS are members of the union of PALS (People with ALS). We
are united by disease and we have the common goal of finding a cure. We
are no different from other advocacy groups although there are two factors
which make our job of raising awareness and applying political pressure
more difficult. First, we are a relatively small group and even if
everyone of our 30,000 were hard working ALS advocates, we still would not
have the clout that other disease groups have. AIDS and cancer advocates
number in the millions. Second, the members of our union of PALS become
weak so quickly and die so soon that little time or energy is left to be

Everyone who gets ALS is told by well-meaning friends, "If there is
anything I can do..." Tell them there is much they can do, beginning with
donating time and/or money to the ALS advocacy group of your choice. If
every PALS family makes a concerted effort at ALS advocacy, we will soon
have the resources to develop research to find a cure.

Are You an Advocate?

PALS Doug Eshleman, Adocate who's life was shortened by ALS.

U.S. Senate August 5, 2006

Who is your Congressman?

ALS legislation in Congress at this time is the ALS Registry Act, HR
4033. Co-Sponsorship is presently 43 in the Senate & 193 in the House.
To see what your Congressman supports use the following link and search by
Bill number. [http://thomas.loc.gov/] http://thomas.loc.gov/

Totals S. 1353 - Registry Act 43 (18 R, 25 D) H.R. 4033 House 193 (69 R,
1 I, 123 D)

A Flower with a Challenge

This flower blooms only once and when it does it is in the dark of night.

As we grow up, we learn that even the one person that wasn't
supposed to ever let you down probably will. You will have your heart
broken probably more than once and it's harder every time. You'll break
hearts too, so remember how it felt when yours was broken. You'll fight
with your best friend. You'll blame a new love for things an old one did.
You'll cry because time is passing too fast, and you'll eventually lose
someone you love. So take too many pictures, laugh too much, and love
like you've never been hurt because every sixty seconds you spend upset
is a minute of happiness you'll never get back.

Don't be afraid that your life will end, be afraid that it will never

Strange things are Possible !

Keep ALS Awareness Alive

4594 Ashton Court

Naples, FL. 34112-8822

(877) 884-4798

a 501(c)(3) non-profit organization

Unauthorized distribution or commercial use of this e-mail is strictly
prohibited. Subscribers are granted permission to forward this newsletter,
so long as the newsletter is forwarded in its entirety, without charge,
and ALS March of Faces is given credit as the author.

This message was sent by: ALS March of Faces, 4594 Ashton Court, Naples, FL 34112-8822

Manage your subscription:


ALS/MND Registry

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