January 12, 2011

PHA News, Pulmonary Hypertension Association, Empowered by hope
Latest Blog Post

Dr. Badesch giving a speech

As we begin...

Five days into the New Year, we had our first big meeting. In 2011, PHA will deliver over three million dollars of medical education across five programs in our Medical Education Fund. » Read more

What's In This Issue

» Spotlight On... Generation Hope Blog 
» Get Smart
» Website Discoveries
» PH Community Scoop

» From the PHA News Desk
» Medical Community Bulletin
» Also of Interest
» PH News Headlines

Spotlight On...

Jenny Janzer

Inspiration 2.0: Generation Hope Launches Blog!

Young Adults Write to Inspire
Generation Hope, PHA's virtual community for young adults with PH, now has a blog! Read about Jenny and friends, who tackle all the adventures of life as 20- and 30-somethings while living with PH. » Visit the Generation Hope blog

Get Smart

Leader Lessons

New Online Opportunities for International Association Leaders 

When we hosted our First International Leaders’ Summit at the 2010 PHA Conference last June, we knew the need for leader development and resources was greater than could be met in one day in California – the 30 participants (including us!) went home hungry for more. » Read more

    PHA Classroom logo

New Year, New Recordings in PHA Classroom!

Just in time for 2011, new recordings from our 9th International PH Conference are available in PHA Classroom. Topics include: Exercising Your Way to a Healthier and Happier State, Defensive Dining, Conserving Your Energy and Strength and more. More sessions coming soon! » View new sessions

    two women smiling together

Newly Diagnosed Patients: Get Your Questions Answered 

Wednesday, Jan. 19, 1:00 p.m. ET
If you or someone you know was recently diagnosed with PH, you probably have a lot of questions. In this webinar, Louise Durst, RN, will review the basics of what every PH patient should know about PH, treatment and coping with this disease. » Register now

    parent and child

Coping Strategies for Parents

Thursday, Jan. 20, 8:30 p.m. ET
Take part in a telephone discussion on coping with your child’s diagnosis. This conversation will be open for one hour; join us for as long as you’d like. Dial toll-free from the U.S. or Canada: 1-866-1260. When prompted, enter access code 5653004. » Learn more about PHA’s Parent Support Resources

    Group photo of a support group

Learn How to Start a Support Group

Tuesday, Jan. 25, 8:00 p.m. ET 
Want to meet another pulmonary hypertension patient in your area but not sure where to start looking? Join PHA’s Debbie Castro and Sophie Klein to learn how to find other patients in your area. » Register now

    doctor and patient

Get the Most Out of Your Medical Appointments

Wednesday, Jan. 26, 12:00 p.m. ET
Deborah Levine, MD, will discuss strategies for communicating effectively with medical professionals, and methods for opening communication between your primary care provider, PH team and other specialists. » Register now

    February calendar

Get a Sneak Peek at February Webinars!

Learn about PH treatments on the horizon with Dr. Michael McGoon on Tuesday, Feb. 1, at 3:30 p.m. ET! Join PHA’s Jessica McKearin and Jenna Roe on Thursday, Feb. 3, at 3:00 p.m. ET to find out about planning a spring special event. » Learn more

Website Discoveries

lung illustration

Things I Found by Kathryn Frix: Transplant Resources

One of the common threads in my correspondence with people new to PH is that they know nothing about it. They had not ever heard of PH before their diagnosis. If they do some reading, they know that transplant is sometimes an option. » Read more 

PH Community Scoop

Joyce & Vernon

Awareness Month Victories Get the New Year Off to a Great Start

Thanks to our awareness-raising efforts in November, the world is a brighter place for PH patients and their loved ones. Each of our 2010 victories provide opportunities for new successes in 2011. » Read more

Kimberlee Ford

Leader Shares Story with ATS 

Silver Spring and DC Capital Breathers Support Groups Leader Kimberlee Ford shared her story in the American Thoracic Society Public Advisory Roundtable (ATS PAR) e-newsletter. The same issue also features an interview with PHA President Rino Aldrighetti. » Read their stories (PDF)

From the PHA News Desk

Tom Lantos

Lantos Application Deadline Extended!

To help those of you who are interested in applying for a Tom Lantos Innovation in Community Service Award of up to $5,000, but got caught up in holiday madness, we have good news. The deadline to apply has been extended until Tuesday, Jan. 18. » Learn more and apply now

Medical Community Bulletin

Speaker at a BME event

Building Medical Education in PH

Enhance the impact of your center’s medical education program by partnering with PHA in 2011! PHA’s Building Medical Education in PH events are designed to foster partnerships between PHA and PH Centers to promote continuing education in the field of PH through CME educational events. » Learn more

Online University logo

PH in Systemic Sclerosis Live Webinar

Virginia Steen, MD, will host a live webinar “PH in Systemic Sclerosis” on PHA Online University on Jan. 27. This webinar is free for medical professionals and is eligible for CME/CEU credits after completion. (This is not a patient-oriented presentation.) » Learn more

Also of Interest

Outline of the state of Arizona with the number 98 inside

PH Community Joins National Fight Against Arizona Budget Cuts 

Beginning last October, Arizona implemented budget cuts and stopped financing certain transplant operations under the state's version of Medicaid. Consequently, 98 beneficiaries were removed from the transplant waiting list. » Read more

    retired couple reading a sheet of paper

The Charitable IRA Rollover Is Back!

If you're looking for the most tax-effective gift to make to a charitable organization, your individual retirement account (IRA) may now be the best choice. Donors aged 70.5 or older are once again eligible to move up to $100,000 from their IRAs directly to qualified charities without having to pay income tax on the money. » Read more

    HHS logo

Proposed Policy to Hold Insurance Companies Accountable

In December 2010, the Department of Health and Human Services (HHS) proposed new rules that would require many insurers to publicly disclose and justify rate increases above a set percentage. » Learn more

    Healthcare team

New Pre-Existing Condition Insurance Plan Available Now

The new Pre-Existing Condition Insurance Plan is available for people who have a pre-existing condition, like PH, and have been without health coverage for at least six months. » Find out if you qualify and learn more about your state’s plan

PH News Headlines

» What Pulmonary Hypertension Is - and Why You Should Know

» Holiday Miracle: Sick Infant Comes Home for Christmas

» New Diagnostic Tool to Detect Complications In Lung Transplant Patients

» More News

Connect with PHA

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Email a mentor. Patients and caregivers are ready to support you.

Upcoming Events

Jan. 18, 2011
How Can You Get a Helping Hand? Grassroots Power!
webinar: online and phone

Jan. 19, 2011
Newly Diagnosed? What You Need to Know
webinar: online and phone

Jan. 20, 2011
PHA Parents Telephone Support Group

» Go to the Events Calendar

Conference Video

Liz Brigham on TV

PH patient Liz Brigham shares her personal story and hits the PH talking points in this television interview. For more information on sharing your story with the media, contact Elisabeth: 301-565-3004 x753 or PHAware@PHAssociation.org.

Quick Poll Results from Last Issue

Who is your biggest support as a PH patient?

77.8% – Spouse/Partner
11.1% – Parent or other relative
11.1% – Friend

Look for a new question in the next issue!

PHA's New Store Item: On sale for members ($3)

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Pulmonary Hypertension Association 801 Roeder Road, Ste. 1000 Silver Spring, MD 20910
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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.