PHA News
In This Issue
Help Turn Senate Success into Victory!
Help Us Test PHA's New Website and Get a Sneak Peek
Choosing the Medicare Part D Plan that Works for You
FDA Approves Intravenous Revatio
Keep Up with the Path to a Cure
Join the Fight and Donate to PHA's End of Year Campaign
Thank You, November Special Events!
PH in the News
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Sustainers Circle
Upcoming Events
    
 3rd Annual A Cure for "Five Pennies," Daddy's Little Girl
Jan. 23, 2010
Schaumburg, Ill.
 
The Woodlands Crawfish Festival
March 27, 2010
The Woodlands, Texas
 
2nd Annual Scramble For A Cure
 April 17, 2010
Las Vegas, Nev.
 
4th Annual Spur a Cure for PH
April 24, 2010
Phoenix, Ariz.
PHA's Ninth International PH Conference and Scientific Sessions
June 25-27, 2010
Orange County, Calif.
Vol 10/Number 24 December 4, 2009
PHA LogoPHANews Editor - Sally Maddox
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Contributing Editors - PHA staff
 
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HELP TURN SENATE SUCCESS INTO VICTORY!
Take ActionPH Bill One Step Closer to Finish Line

After regular contact from the Pennsylvania PH community, as well as a visit from a PH patient and her family during PHA's Congressional Luncheon, Sen. Bob Casey agreed to introduce the PH Research and Education Act in the Senate!

Now, you can help build co-sponsorship and move the bill toward a Senate vote. Please thank Sen. Casey and ask your senator for his or her co-sponsorship.
 
HELP US TEST PHA'S NEW WEBSITE AND GET A SNEAK PEEK!
screenshot of the new sitePHA's website has been undergoing a makeover from the design to the navigational structure. And we're in the final stretch! Our new website will launch in early January, and we need your help.

We are seeking community volunteers to help us test the site the week of December 14. Testing is easy to do and requires no special computer knowledge - just you, a computer and an Internet connection. We will give you simple tasks - like filling out a form or finding a particular type of resource - and you report back about how it went. That's all it takes!

Interested? You can do as many or as few testing scenarios as you have time for. Contact our webmaster, Diane, at Web@PHAssociation.org with the dates and approximately how much time you have available the week of Dec. 14.

Not available the week of Dec. 14 but still want to help? We will have continued testing needs throughout December and January so please contact Diane and let her know your availability.
CHOOSING THE MEDICARE PART D PLAN THAT WORKS FOR YOU
Tuesday, Dec. 8
3:00 p.m. ET
Join the Chat Tuesday
 
Medicare's Annual Coordinated Enrollment Period ends Dec. 31! Chat online with PHA and the Medicare Rights Center to discuss how to choose a Part D plan that works for you.
 
Read and print our guide to choosing a plan (PDF) so you can be ready with questions. You can also send in your questions ahead of time by emailing them to Insurance@PHAssociation.org

FDA APPROVES INTRAVENOUS REVATIO
Last month, the FDA approved an IV formulation of Revatio (Sildenafil), making it the only PH treatment available both orally and by injection.

KEEP UP WITH THE PATH TO A CURE
Mt. KilimanjaroThis February, Drs. Ray Benza and Robert Frantz will ascend the 19,330-foot-tall Mount Kilimanjaro to raise funds and awareness for pulmonary hypertension. You can track their preparation for this adventure at their blog.

Interested in planning a casual "fun walk" to support the doctors' climb? Find out how to organize a Unity Walk in your area!
JOIN THE FIGHT AND DONATE TO PHA'S END OF YEAR CAMPAIGN
DonateEvery day, we are touched by the stories of PH community members. We hear about the struggles and triumphs of PH patients and family members who are doing their best to live each day fully. These stories remind us why our work is so important. This holiday season, we ask you to join us in the fight against PH by donating to PHA's End of Year Campaign.

Don't miss the chance to double your impact! Thanks to a generous matching gift challenge from Pfizer, Inc., the first $22,500 donated to the campaign will be matched dollar-for-dollar.
THANK YOU, NOVEMBER SPECIAL EVENTS!
Awareness Month was a busy time for PHA Special Events! We thank each event's wonderful organizers, volunteers, attendees and donors for their continued commitment to the PH community. From walking for hope to reaching for the stars, we're striving for a PH cure!
  • 9th Annual Race Against PH - Palo Alto, Calif.
  • Baltimore PH Walk for Hope - Baltimore, Md.
  • Travis County PH Funwalk - Austin, Texas
  • An Evening of Awareness - Salt Lake City, Utah
  • St Louis PHA Dinner/Wine Tasting Fundraiser - St. Louis, Mo.
  • Arizona Cure PH Casino Night - Phoenix, Ariz.
  • 8th Annual PH Awareness Luncheon and Conference - Lansing, Mich.
  • 2nd Annual South Florida PH Funwalk - Pompano Beach, Fla.
  • 3rd Annual North Texas PH Funwalk - Euless, Texas
  • Glitz, Glitter and Glam! - Sarasota, Fla.
  • Rochester PHA Gala: Reach for the Stars, Karaoke for a Cause - Rochester, Minn.
  • 2nd Annual Gospel Musical Extravaganza - Roseland, La.
  • Inaugural Louisiana Funwalk for PH - Chalmette, La.
PH in the NewsPH IN THE NEWS
Searching for Answers - New Hartford Woman Battling Rare Disease
(The Republican-American) New Hartford, Conn. - The New Hartford woman's thorough approach to monitoring and handling the important aspects of her life - particularly child rearing and her job as an online college instructor - is reflected in the way she is tackling the mysterious and rare condition that changed her life two years ago. Read article 
 
After Son's Success, Mom Wants More Awareness About Pulmonary Hypertension
(CBS-6 Albany) Albany, N.Y. - When Arthur Raney was just three and a half months old, doctors at Albany Medical Center said he only had two to three years to live. They'd discovered Arthur had pulmonary hypertension disease, a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery rises above normal levels and may become life threatening. Read article
 
A Prospective, Randomized, Crossover Pilot Study of Inhaled Nitric Oxide Versus Inhaled Irostacyclin in Heart Transplant and Lung Transplant Recipients
(The Journal of Thoracic and Cardiovascular Surgery) - Inhaled nitric oxide has been shown to reduce pulmonary vascular resistance in patients undergoing cardiothoracic surgery, but it is limited by toxicity, the need for special monitoring, and cost. Inhaled prostacyclin also decreases pulmonary artery pressure, is relatively free of toxicity, requires no specific monitoring, and is less expensive. Read article

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NORD

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.