Brick by Brick Newsletter
 

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Building Awareness Brick by Brick

October 2006

Where Advocacy and Awareness Continue

ModelTalker

The ModelTalker Speech Synthesis System is a revolutionary software
package designed to benefit people who are losing or who have already lost
their ability to speak. It allows people with ALS or other conditions to
use a synthetic version of their own voice for communication, or to choose
a voice best suited to represent them. The Talker could take some time as
the Inventory List is quite large. This utility is user friendly and easy
to download. The logo lets you find all the information.

[http://wagstaff.asel.udel.edu/speech/]

[http://www.prize4life.org/] Prize4Life - Joins the fight against ALS/MND

[http://www.prize4life.org/]

Prize4Life was founded by a group of Harvard Business School students,
including an ALS patient, who believe that prizes will act as powerful
incentives to accelerate ALS research to the point where the private
sector will invest in developing an effective treatment. We are all
volunteers and we hope you will volunteer as well. Their mission is to
create powerful incentives to further ALS research, increase global
awareness, and explore novel treatment approaches by attracting private
investments that ultimately lead to the development of an effective ALS
treatment.

Back to Basics:

-

Patients first . Avichai Kremer, one of the Harvard Business School
students who founded Prize4Life, was diagnosed with ALS in 2004. We
therefore know the disease firsthand and have a sense of urgency to find a
treatment. We value patients and their viewpoints. Patients please speak up
and tell us what you think.
-

Global awareness . Imagine the resources provided and research conducted,
if ALS received the same attention as HIV/AIDS. We plan to push ALS to the
forefront of fatal disease issues. We need your help in order to do this.
-

New people & new ideas . We believe the solutions to the ALS problems may
reside in the minds and laboratories of people who are not currently
researching the disease. Our platform is a bridge for reaching these
people.
-

Results . Research is traditionally funded upfront, before an idea is even
tested. Our prize model ensures that only clear research results, vetted by
a team of scientific advisors, are rewarded.

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Gizmos & Gadgets

When it comes to ALS each day presents us a new challenge and it seems
like someone is always putting another obstacle for us to overcome. Todays
Internet gives us an advantage that others before us did not have.
Sometimes being creative is all it takes and ALS makes us all be very
creative. Gadgets have come from great minds like many of us who are
surviving ALS. For example we have been models of clothing made
specifically for people who use wheelchairs. Pants, shirts, jackets,
shoes, boots and more have been designed for comfort and convenience. The
items are designed with clever features like openings in the back, and
made not to look rumpled or illfitting on someone who's seated. Although
not always available in your local department store, this specialized
clothing can usually be purchased over the internet. Look for items with
Velcro closures or snaps rather than buttons, or consider altering your
existing clothing with these closures. Homemade zipper pulls can be made
by tying a piece of cloth or attaching a circular key ring, piece of
fishing line, or other object. Slip-on shoes are easiest for dressing, and
those with Velcro closures avoid laces. Spiral, "no-tie" shoelaces just
need to be twisted once or twice and allow you to secure a shoe without
having to tie a knot. Elastic shoelaces look like regular laces except for
the elastic "give." The elasticity ill allow you to slip shoes on or off
more easily. Long-handled shoe horns are helpful for slipping on shoes
without having to bend down as far. Sock aids prevent you from having to
bend down to slip on socks. One version holds the open sock at the end of
a U-shaped device that has long rope handles. Another consists of a wire
or plastic frame that holds socks or stockings in place for the next
dressing time. Whenever possible, sit while dressing so you can safely
rest as needed. If one side of the body is weaker, it takes less effort to
dress this side first. For example, put the weaker arm into the shirt
sleeve first, the stronger arm next. If you are need of larger Gizmos it
might be a good idea to check with your ALS / MDA organization first to
see if the item is listed in their loaner closet. Gadget season never
ends, Happy Hunting.

by PALS Leon Peek

Links

[http://www.allegromedical.com/] Allegro Medical

[http://www.ameds.com/] AMEDS

[http://www.beabletodo.com/] Be Able to Do

[http://www.sammonspreston.com/] Sammons Preston

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Influenza and Pneumovax Immunizations for ALS

Flu shots are highly recommended for people living with ALS, their
caregivers and anyone who comes in regular contact with a person living
with ALS because the flu can lead to serious, life-threatening problems,
such as pneumonia. At least 45,000 Americans die each year from influenza
and pneumonia. Combined, the two conditions are the sixth leading cause of
death in the United States. Ninety percent of these deaths are among people
65 and older. There are a large number of different viruses that can cause
a flu-like illness or the common cold. The flu shot provides protection
from influenza, but not the many other respiratory virus infections. Some
people will still get the flu even though they’ve had the influenza
immunization, but it will usually be a milder case. The influenza
immunization is highly recommended because the flu virus may increase the
production of thick mucous secretions in the respiratory tract. This
creates a problem for people living with ALS who may have an impaired
ability to cough productively. Aperson with a weak cough may have
difficulty moving these secretions along and may feel as if he/she is
choking. Viruses can be transmitted in one of two ways:

1) Touching respiratory secretions on a person’s skin (when shaking hands)
or on environmental surfaces (doorknobs or handrails) and then touching the
eyes, nose or mouth.

2) Inhaling infectious particles in the air (respiratory secretions from
a cough or sneeze). Hand washing is the best way to avoid contamination
with the flu virus, along with not touching the nose, eyes or mouth. Other
helpful measures include avoiding close exposure to people with the flu and
always sneezing or coughing into a tissue and immediately throwing it away.
Caregivers, family members and visiting friends who have an active flu
virus may wear a facemask if they have close contact with someone living
with ALS, but this may not be sufficient to prevent infection. Washing
hands regularly is also recommended. During the winter months, when the
influenza virus typically spreads, try to avoid being in crowds; and plan
to do holiday shopping early to avoid crowds. The most important tool for
fighting the ever-changing flu virus is immunization. It is strongly
recommended that people living with ALS, and other neuromuscular diseases,
their caregivers, and anyone who has regular contact with a person with
ALS.

• Influenza immunization every year in October or November
• Pneumovax immunization (this should be repeated once after five years)

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Where in the World is the Banner?

Oct. 10

Team 7 Fighting ALS

8th Annual Dinner
& Silent Auction
Erlanger, KY

Oct. 21

ALS Association
Orange Co. Ca.

Walk to D'feet
Mason Regional Park

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Keyboards of Kourage

ALS Awareness Web Site

Say Hello to Aimee

Aimee is a reluctant warrior, drawn into the fight against Amyotrophic
Lateral Sclerosis (ALS), a disease that slurs Aimee's speech and erodes
her strength, causes her to choke and splutter and stumble and fall. A
disease that leads her oldest to use his third-grade math skills to try to
figure out Aimee's life expectancy. A disease that leads Jim to work hard
all day, then come home to another full-time job of picking up the slack
with the cooking, housekeeping, errand-running, etc. Aimee is the mother
of Nicholas (age 9), Emily (6) and Zachary (2). She loves them dearly.
She kisses their boo-boos, soothes their hurt feelings, hugs them tightly
when they've had bad dreams. She would do anything — endure anything — to
spare them pain. And she aches for them, knowing there is one pain she
can't prevent. A disease that leads her children to worry about whether
wicked stepmothers really exist.

This story of ALS and Courage you will not want to miss. When you visit be
sure you take time and stay a while, you'll be glad you did.

[http://www.askaboutaimee.com/index.html] askaboutaimee.com

[Newsletter.htm] Tell A Friend

[http://www.askaboutaimee.com/index.html]
[Newsletter.htm]

Questions or comments?
E-mail [mailto:leonpeek@earthlink.net] Leon Peek

4594 Ashton Court
Naples, FL. 34112-8822
(877) 884-4798
a 501(c)(3) non-profit organization

http://www.march-of-faces.org
This message was sent by: ALS March of Faces, 4594 Ashton Court, Naples, FL 34112-8822