Portland observer. (Portland, Or.) 1970-current, March 23, 2011, Page 16, Image 16

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    Cl,i ^Jortlanb (Dbseruer
Page 16
M arch 23, 2011
H ealthjviatiebs
diseases, the spirit to overcome
must continue.
When a disease is categorized as
“rare,” many assume it’s a faraway
problem or something you only hear
about in the news.
by L arry L ucas
the civil rights
But that is not necessarily the
Many in our community have movement, to the
case: There are nearly 7,000 rare
dedicated their lives to addressing everyday hero feeding the hungry diseases. In fact, a disease is con­
issues that others felt powerless to in the toughest neighborhoods.
sidered “rare” if fewer than 200,000
change - from someone as prolific
When it comes to helping the 25 people suffer from it - hardly a small
as Dr. Martin Luther King, Jr. and million people suffering from rare number. W hat’s more, those that
impact African Americans are often
genetically linked - and difficult to
SUB BIDS REQUESTED
prevent.
Camp Rilea Water Treatment Plant and
Som e rare d ise a se s, like
Alzheimer’s, well known and have a
Wastewater System Improvements
strong advocacy community sur­
Warrenton, Oregon
rounding them. Though technically
Bid Package #3 - Fencing & Signage
considered “rare” today, the num­
Bids Due: March 24,2011 at 2:00 p.m.
ber of Alzheimer’s patients is ex­
pected to rise to 13.5 million by 2015
Bid Documents - Willamette Print & Blueprint (503/223-5011)
- moving it decidedly into the “com­
or www.bxwa.com
mon” category. Other rare diseases
Hoffman Construction
are less visible to the general public
Company of Oregon
- but extremely visible within our
Phone: (5 0 3 ) 221-8811 - Bid Fax: (503) 221-8888
community.
805 SW Broadway, Suite 2100 - Portland, OR 97205 - CCB LIC# 28417
Sickle cell anemia is a rare, ge­
We are an equal opportunity employer and request sub bids from all interested firms including
disadvantaged, minority, women, disabled veterans and emerging small business enterprises.
netic blood disorder nearly 72,000
Other Subcontracting Opportunities - Internet http://www.hoffmancorp.com
Americans live with, most of whose
The Spirit to Overcome
ancestors came from Africa. In fact,
one in 12 African Americans carries
the sickle cell trait.
Sickle cell anemia affects hemo­
globin, the red blood cell component
that carries oxygen from the lungs to
your organs and tissues, then return­
ing carbon dioxide to the lungs. When
someone suffers from sickle cell ane­
mia, defective hemoglobin causes red
blood cells to stiffen and misshape,
clog narrow veins and block the oxy­
gen-filled blood from reaching the
body’s organs.
Whereas healthy red blood cells
live about four months, sickle red
cells typically die within three weeks.
Some sickle cell patients suffer more
mild side effects, such as hand or
foot swelling, slight fever and skin
discoloration. But others can suffer
from extreme pain, blindness or
stroke. Sickle cell patients are much
more vulnerable to infections and
have a harder time fighting them.
Like many rare diseases, there is
no cure for sickle cell anemia today.
But there is hope. Just 20 years ago,
patients had no prescription op­
tions to manage the disease’s ef­
fects. Today, there are many differ­
ent treatments.
For sickle cell anemia and many
other diseases the future is promis­
ing: There are 400 new medicines in
development for rare diseases by
America’s biopharmaceutical re­
search and manufacturing compa­
nies.
D eveloping these m edicines
means very little if patients in need
can’t access them. Luckily, there are
programs available to help patients
find and pay for their prescriptions.
S ince
2005,
A m e ric a ’s
biopharmaceutical researchers and
manufacturers have supported the
Partnership for Prescription Assis­
tan ce
(1 -8 8 8 -4 P P A -N O W ;
pparx.org), which connects patients
in need to 475 assistance programs
that offer more than 2,500 medicines
for free or nearly free.
Patients and their families living
with rare diseases shouldn’t feel
powerless. Every day, America’s
biopharmaceutical researchers are
working to ensure they feel just the
opposite - hopeful.
Larry Lucas is retired vice presi­
dent fo r Pharmaceutical Research
and Manufacturers o f America.
First Lady Writes Book
on Healthy Eating
Passover
with
Pastor Larry Huch
My Fathers House Welcomes
Pastor Larry Huch for an
Evening of Ministry
Friday, April 8th at 7pm
N e w S o n g C o m m u n ity C e n te r
2511NE M IX Bind • Portland, OR 97212
Corner of NE MEN Mod and Russell Street
*
Doors open at 6pm for every service.
For directions or more information, call 503-488-5481
or log on to w iM W .m fh m p o r tla n d .c o m
Sharing
experiences
from White
House garden
(AP) — There's a new author in
the White House: Michelle Obama.
The first lady has signed with the
Crown Publishing Group for a book
about the garden she started on the
South Lawn of the White House
and the benefits of healthy eating.
The book, currently untitled, is
scheduled to come out in April 2012.
Obama received no advance and
will donate all proceeds to a charity
or charities to be determined.
The White House said the gar­
den has yielded more than 2,000
pounds of fresh fruits and veg­
etables.
'We've gotten food out of the
garden, and we can eat it and it's
good," Obama said last week during
a brief telephone interview. "So we
wanted to share the story with the
rest o f the nation and perhaps with
the rest of the world, because we get
so many questions about the gar­
den: How did we do it? Why did we
do it? How do I do this in my own
home or community?"
The first lady, 47, has been an
advocate for locally grown food and
last year started an anti-obesity
r
L
First Lady Michelle Obama
works on the garden she
started at the White House.
She’s writing a book about the
project and the benefits of
healthy eating.
campaign, "Let's Move!" Accord­
ing to Crown, the book will be "in­
spirational and instructive, and will
provide ideas and resources for read­
ers to get involved in the movement
to create community, school and
urban gardens, support local farm­
ers' markets, and make small lifestyle
changes to achieve big health re­
sults.
"Mrs. Obama will also share some
of her family's favorite healthy reci­
pes."
Editions will include an illustrated
hardcover, an e-book and an "en­
hanced" multimedia e-book.