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PHA News Archive - April 17, 2007

Vol 8, Number 8

PHA News April 17, 2007  
PHA News is an e-mail newsletter from the Pulmonary Hypertension Association covering PH related topics.

PHA News Editor - Sally Maddox skmaddox@bellsouth.net
Contributing Editors - PHA staff
reaching over 6300 subscribers
www.PHAssociation.org

PHA News is meant to give a picture of recent events and activities affecting the life
of the PH community. This compilation should not be viewed as endorsement of the
information provided or its accuracy.
Topics For This Issue

HEADLINES
--Great PH Advocacy Victories for Two 435 Campaign Members
--10 Things to Do When You, Your Child or Someone You Love is Diagnosed with PH
--Snanimals Honor the Memory of Daughter with PH

NEWS
--PH Resource Network Members Publish Article in "Critical Care Nurse"
--Honouring Joanita's Memory
--Heartfelt Delivery

ANNOUNCEMENTS
--Agenda Posted, 100th Scholarship Awarded for PH Resource Network Symposium
--PathWriters Wanted: Help Us Collect Stories from the Community

Highlights from the PH Community:

Great PH Advocacy Victories for Two 435 Campaign Members

Patty FarrowPatty Farrow: PH Awareness Month Resolutions in New Jersey
With persistence, Patty Farrow has seen her PH advocacy grow from a casual conversation with the mayor of her small town to a pending resolution in the New Jersey legislature. The resolution calls for every November in New Jersey to be declared Pulmonary Hypertension Awareness Month! Patty has been working with her local elected officials on an ongoing basis over the past year to raise awareness about PH. Read more about her exciting progress and see a copy of the recently proposed state resolution

Cindy Pickles, Karen Parker, Senator Richard Burr, Diane Ramirez, and Tonya RobertsonCindy Pickles: Piedmont Support Group Members Educate their Senator about PH in Person
Cindy Pickles, a member of the 435 Campaign, led a successful meeting with Senator Burr of North Carolina in his home office recently. Cindy contacted Senator Burr’s office and requested a meeting six months ago, so the call inviting her to a meeting the following Monday came as something of a surprise. None-the-less, Cindy jumped at the opportunity to be face to face with her Senator talking about pulmonary hypertension. Read more

Join the 435 Campaign!
By becoming a member of the 435 Campaign, you let PHA know that we can count on you to communicate with your Members of Congress three or more times each year through e-mails, letters, calls or visits. With your help, we’ll reach our goal of insuring that every Member of Congress knows the name, face and story of at least one person impacted by PH. PHA provides the tips, talking points and other resources to make advocacy easy. As a member of the 435 Campaign you'll also receive "first alert" emails from PHA notifying you of the latest policy updates and action alerts. You provide the most important ingredient — the story of how PH has impacted you. Join now by contacting Katie at advocacy@PHAssociation.org or 301-565-3004 x109.

Not Ready for the 435 Campaign? Sign-up for Advocacy Action Alerts
Are you or someone you know not ready to commit to the 435 Campaign but still want to receive advocacy alerts and updates anyway? Through PHA's new Advocacy Action Alert list, you’ll receive monthly action alerts and progress updates on a range of important PH issues. Sign-up for Advocacy Action Alerts by choosing the "Update Profile/Email Address" link at the bottom of this email or if you were forwarded this e-mail from a friend go to http://ui.constantcontact.com/d.jsp?m=1011161075025&p=oi.

10 Things to Do

When You, Your Child or Someone You Love is Diagnosed with Pulmonary Hypertension

Our new "10 Things to Do" one-pager is now available to order online from our free materials order form.

Order "10 Things to Do" to give out to your family and friends

Highlight from the PH Community:

Snanimals Honor the Memory of Daughter with PH

Anna Banana Monkey sneakerJane Perillo’s daughter Emma was diagnosed with PAH at the age of 22 months and fought a hard battle for a year-and-a-half. In January of 2007, Emma entered into her next journey as she left this world asleep in her bed.

Emma now lives on in shoes designed with all the animals she loved. From bumblebees to elephants and monkeys, each shoe is made with love in Emma's memory. Jane and her company, Snanimals, are proud to announce that they will donate 5% of the online sales of these products and 20% of online sales for a new line of Cure PH items to the Pulmonary Hypertension Association to help in the search for a cure.

See these adorable products and place an online order

NEWS

PH Resource Network Members Publish Article in "Critical Care Nurse"
Allison Widlitz, Susie McDevitt, Ginger Ward and Abby Kirchman recently published “Practical Aspects of Continuous Intravenous Treprostinil Therapy” in the April 2007 issue of Critical Care Nurse. Read more
Read more about the PH Resource Network

Honouring Joanita's Memory
(United Kingdom) Running the Flora London Marathon will mean a lot to John Masey as he honours a friend who died of a rare disease. Mr Masey, of Beecham Berry, Basingstoke, wants to raise as much money as possible for the Royal Free Hampstead Charitable Trust, which conducts research into pulmonary hypertension. Read more

Heartfelt Delivery
Doctors at University Hospital help women with heart defects through difficult pregnancies. Those cases can include women with pulmonary hypertension, or high blood pressure in the lungs, said Brann. In that instance, the mother has a 50 percent chance of dying during pregnancy, and the risk is even higher for the fetus. Read more

ANNOUNCEMENTS

PH Resource Network Symposium 2005Agenda Posted, 100th Scholarship Awarded for PH Resource Network Symposium
The agenda for the 2007 PH Resource Network Symposium is now available online. The Symposium is working out to be an exciting couple of days. Last week, PHA gave out the 100th Scholarship for the Symposium. Thanks to an unrestricted educational grant from Actelion Pharmaceuticals, the first 300 eligible PH Resource Network members register for free. Act now to secure your spot! Please visit www.PHAssociation.org/PHRN/Symposium for details.

PathWriters Wanted: Help Us Collect Stories from the Community
Help us collect and write stories from the community by becoming a PathWriter. Report on activities from your support group and/or local area. Help us stay connected on a regular basis by gathering information, highlights and photos that can be used for spotlights on the website and as ideas for Pathlight articles. Report on your group’s activities and help readers navigate the day-to-day challenges of living with PH by sharing practical tips. We also need volunteers who like to write and/or who are comfortable interviewing patients, family members and medical professionals. We are also looking for youth writers — or writers youthful at heart — to help with stories for Under21.
Interested in becoming a PathWriter or learning more?
Contact Diane at pha@PHAssociation.org or 301-565-3004 x119.


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