This past
year the PH community has supported each other and raised thousands of
dollars for programs and research. If you haven't already, please take
a look at our 2004
annual report to see all we've accomplished together. Once again,
we'd like to say thank you and let you know how much we look forward to
another year of building PHA.
We'd also
like to let you know that there is still time to support PHA in 2004!
Renew your membership
or make
a gift to PHA online right now!
There are
many ways to contribute. The Giving
at Year-End Brochure may be helpful as you consider the benefits of
giving at this time of year.
If you have
already made a year-end gift to PHA or renewed your membership to PHA,
let me offer a few more things to add to your New Year's Resolutions list:
Learn how
you can become a member of the Legacy Society
Participate
in the Circle of Friends letter-writing campaign
Become
a PHA Workplace Ambassador
Contact PHA's
Development Director, Katherine
Lowe at 301.565.3004 ext. 110 to learn how. (more ways to
help PHA)
Magnetic
Car Ribbons now available
By popular demand, PHA is now offering periwinkle magnetic ribbons for your car. Car ribbons have become a popular way to raise awareness about diseases in communities.
FDA
Approves Ventavis™ for Pulmonary Arterial Hypertension (PAH)
CoTherix, Inc (Nasdaq: CTRX) today
announced that following priority review, the US Food and Drug Administration
(FDA) has approved Ventavis(TM) (iloprost) Inhalation Solution for
the treatment of pulmonary arterial hypertension (PAH) in patients
with NYHA Class III or IV symptoms. PAH is a highly debilitating and
potentially fatal disease characterized by high blood pressure in
the pulmonary arteries of the lungs. Ventavis is currently marketed
by Schering AG in several European countries and Australia, and now
will be made available in the U.S. through CoTherix.
This Thanksgiving Day was fraught with
fear and anxiety for my family and me. The morning before, my fourth grandson,
"Baby T," a k a Tennyson, entered the world at a robust 8 pounds 14 ounces.
Baby T was breathing, all right, but the
oxygen was not getting into his blood, because the pulmonary artery was
bypassing the lungs.This life-threatening condition is called persistent
pulmonary hypertension of the newborn. Experts say it is rare, but to
me it is surprisingly common, afflicting an estimated one baby in 700,
most of them, like Baby T, born full-term or post-term.
Pulmonary
Hypertension - A Patient's Survival Guide The premiere information resource
for people dealing with PH -- they have ARRIVED and are ready to
ship!!!
The author, a PH patient herself,
knows what it is like to live with the disease. She talked to many
other patients, doctors, and researchers while writing the Survival
Guide. Dr. Ronald J. Oudiz and a team of physicians with a deep
knowledge of PH edited the book for accuracy.
New edition contains a chart
of 15 drugs used to treat PH; results of recent
clinical trials;
in-depth discussion of PH secondary to other diseases
or conditions;
a new chapter on what to eat if you have PH; and much, much more!
THE
TRANSPLANT ODYSSEYS UPHILL, DOWNHILL
Carrie Shellhammer's climb back to health peaks with
once-unthinkable trip to slopes
It was a perfect December day for downhill
skiing: bright sun, good powder, warm weather, no crowds. For 27-year-old
Carrie Shellhammer, it was beyond perfect.
A year ago, she was dying.
She'd gotten sick at the age of 19 and
was eventually diagnosed with primary pulmonary hypertension and Osler-Weber-Rendu
syndrome, a genetic disorder.
Last year, when she entered UCSF Medical
Center on Nov. 19, she knew she wasn't getting out again -- not without
a double-lung transplant that might or might not happen.
While you're shopping the post holiday
sales, remember that your online shopping can support PHA without costing
you one extra cent. How? By joining the free charity Web site www.iGive.com.
How iGive works: 1) Register on the iGive Web site. 2) Designate PHA as
your charity of choice to receive a percentage of your purchases. 3) Start
shopping!
Your iGive purchases are automatically
tracked and donations are credited to your account within 30 days from
the day your items are shipped.
For a limited time, iGive.com is giving
away FREE $5 donations for each new member who joins iGive and shops within
45 days! Join, shop and tell your friends, family and co-worker to join
and shop too.
Not an online shopper? You
can still support PHA with your next trip to the mall or grocery store.
Through eScrip, participating merchants across the country donate a portion
of your purchases to PHA. All you have to do is sign up at www.eScrip.com
and indicate that you want PHA to benefit from your shopping at participating
merchants. Then link your various buying-club cards and/or credit cards
to your account and every time you use one of your cards at a participating
merchant, PHA will receive a percentage of your purchase amount. Participating
merchants include Safeway and Macy's among others-a complete regional
list of participating merchants is available on the eScrip Web site.
If you have any questions about iGive or
eScrip, visit their Web sites or contact PHA's Development Director Katherine
Lowe at 301.565.3004, ext. 110.
Patients call for an end to red tape
Sufferers of a rare lung disease need
immediate treatment to survive and should not have to wait for approval,
a patients' rights group says.
About 30 patients who suffer from a rare
lung disease known as pulmonary arterial hypertension (PAH) yesterday
called on the government to relax regulations on life-saving drugs and
give them the costly medication before the disease catches up with them.
The
information provided on the PHA website is provided for general information
only. It is not intended as legal, medical or other professional
advice, and should not be relied upon as a substitute for consultations
with qualified professionals who are familiar with your individual
needs.
Happy
New Year and Thank You!
