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In
this issue:
Letter from the President and CEO
You
Can't Prevent a Disaster, but You Can be Prepared
Disasters can strike when you least
expect it. For those living with ALS and their
families, a disaster can be twice as hard to overcome.
The only thing you can do is to be prepared and
well-informed year-round.
First, learn which disasters impact your community so
you can better plan for your safety. While disaster
prevention is not always an option, having an emergency
plan can decrease the threat to your loved ones, your
home, and your valuables.
Disaster prevention should include:
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Developing a Family Plan
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Creating a Disaster Supply Kit
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Having a Place to Go
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Securing Your Home
Also, be sure to read the article below
on how to simplify your home. It is incredibly helpful
if all your necessities can be easily found during an
emergency. For a checklist of disaster preparations for
ALS patients and their loved ones, please visit
our website.
Sincerely,
Ken Brissa
President and CEO
The ALS Association Arizona Chapter
Patient and Caregiver Services
Ask the Doc: Adapting to ALS as it Progresses
Monthly “Question and Answer” with Dr. Kasarskis —
The topic this month is “Adapting to ALS as it
Progresses”
Read the full story.
The ALS Association Arizona Chapter has a variety of
resources to help you improve your quality of life.
Please learn more about our
support groups and
caregiver tips to enhance your ability to deal with
the physical and emotional issues associated with ALS.
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Simplifying Your Home Environment
One of the challenges of ensuring mobility and access
to what you most need is that the modern American home
is often a bit cluttered. Tables, lamps, piles of books
and magazines, and even decorations can all make it more
difficult for people with impaired movement and mobility
to have what they need at hand. Here are some tips from
organizing and design experts to help you simplify your
home environment:
Remember, simplification means saving time and energy
for
everyone.
- Create a place you love to be. It might be a
sunny room with your bird in a cage, or perhaps a
spot with a lovely view of the yard, a restful, cozy
corner, or the best seat in the house, right in
front of the big screen TV. Make it convenient, have
the things you like to use right there next to you,
and enjoy it!
- Make an organized effort to declutter. Ensure
there’s room to get around your furniture and try to
convert your home’s obstacle course into more of an
open road.
- Put the things you need for certain activities
all together, in a plastic carryall or a basket.
That will make it easier for you and will also
assist those who are helping you to have what you
want when you want it. For example, you could have a
plastic carryall with everything you need for a
shave, or all your post-shower accessories, or even
the items you need to send a bill or a note (right
down to the pen and stamps).
For more ideas:
- Simplify Your Space, by Marchia
Ramsland
- Organizing Your Home, by Emily Wilska
Research
ALS Biomarkers Clinical Research Study Call for
Participants
Researchers are looking for 250 people to participate
in an ALS biomarker study. Participants must be at
least 30 years of age, be willing to have blood and
cerebrospinal fluid (CSF) drawn for the study, and
participate in follow up phone calls and visits
approximately every 6 months.
The ALS Association has funded several studies to
support efforts to identify biomarkers: in particular, a
collaboration between investigators at University of
Pittsburgh, Massachusetts General Hospital and Metabolon
(a diagnostic products and services company) to identify
signatures for the disease. Initial studies identified
potential markers. Most of these biomarkers have been
discovered in the CSF. It is crucial to repeat these
findings in a much larger number of samples to better
evaluate the ability of the biomarkers to accurately
predict ALS. We must also determine if these biomarkers
can not only be recognized in the CSF but also detected
in the blood. It is anticipated that some of these
biomarkers may also help predict treatment outcome.
Click here to read more.
How You Can Help
Last Chance to
Make Every Hit Count
This Sunday will
mark the 71st anniversary of Lou Gehrig’s memorable
farewell address at Yankee Stadium™. This weekend will
be your
last opportunity to turn one day of baseball into a
fight against Lou Gehrig’s Disease. Join thousands of
baseball fans and supporters of the fight against ALS
across America who have signed-up to participate in the
Covering All the Bases® Hitting Challenge as part of
Major League Baseball’s 4♦ALS initiative.
Your participation will help support ALS Association
chapter patient service programs, cutting-edge ALS
research, and our advocacy efforts on Capitol Hill.
Commemorative thank you gifts are offered to donors
based on their level of giving.
If you have already participated, thank you! You have
truly made a difference and your support serves as
inspiration and hope to those courageously battling this
disease.
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