Thursday, March 26, 2015

Mom Enters Mrs. New Mexico Pageant to Help Fight PH

https://www.phassociation.org/PressRelease032615
Los Lunas, N.M., resident Lyndsi Alderete never thought of participating in a pageant. Not until last year, when she attended a pageant and had an idea. Lyndsi’s daughter Eliana has pulmonary hypertension (PH) and the disease has turned the Alderete’s world upside down since Eliana was born in 2003. Lyndsi entered the pageant, which takes place this weekend, to raise awareness about her daughter’s disease. Read more.

Last year, Eliana created a touching PH awareness video.

Patients’ Access to Treatment Act Reintroduced to Congress

The Patients’ Access to Treatment Act, a bill that seeks to rein in high cost-sharing for specialty medications and allow patients with PH and other chronic conditions to access and afford the treatments they need, was reintroduced into Congress yesterday, Wednesday, March 25. This year's National Call-In Day on April 16, will focus on the Patients’ Access to Treatment Act. Learn more.

Wednesday, March 25, 2015

PHA VP to go Over the Edge for PH

http://www.o2breathe.org/faf/donorReg/donorPledge.asp?ievent=1130486&lis=1&kntae1130486=F05B44953DA4485AA553F155D56BF895&supId=403636254Saturday, April 11, 2015
Four Seasons Hotel Houston

PHA Executive Vice President Carl Hicks will be the first participant to rappel down the side of the 29-story Four Seasons Hotel Houston as part of PHA Lone Star Chapter’s Over the Edge, Face Your PHears event on Saturday, April 11. Learn more or donate to Carl's fundraising page as he raises funds in memory of his daughter Meaghan, who passed away from PH.

Tuesday, March 24, 2015

Member of PHA Early Diagnosis Campaign Speaks to Legislators

http://www.phassociation.org/SometimesItsPH
Dr. Peter Leary, a member of the Pulmonary Hypertension Association's Early Diagnosis campaign, will be speaking to Washington State legislators on pulmonary hypertension and the importance of early diagnosis at a Women in Government event this morning. Dr. Leary is an assistant professor at the University of Washington Medical Center’s Division of Pulmonary and Critical Care Medicine. Learn more about PHA’s Early Diagnosis campaign.

Free Coping with PH Guides Available

Over the past decade, the quality of pulmonary hypertension care has improved greatly. While everyone has “blue” days, it’s important to realize that many PH patients are living long and active lives — and that you can, too.

You can download or order free print copies of complete coping guides to learn about what to expect and how to move forward if you or someone in your family is living with PH. We have guides for newly diagnosed patients, long-term survivors, parents, caregivers and teens. Learn more.

Friday, March 20, 2015

Help PHA Ensure that Every Patient Has Access to a Support Group

When PHA was formed, one of the main goals our founders had was to end the isolation PH patients and caregivers often face because of this diagnosis. PHA is proud to continue that work by helping community members across the country lead support groups for patients and caregivers in their local areas. Today, PHA is proud to have over 245 support groups providing in-person support, resources and education to patients and caregivers.

As amazing as that number is, we know there are still many patients and caregivers who live too far from a support group to attend meetings regularly. At PHA, we work hard to not only support our existing groups and make sure they have the best resources around, but also to set up more groups so more people will have access to this important support system.

You can help sustain that mission today, with a donation to PHA. Your gift will help PHA not only provide the best resources to support group leaders but also help us start more support groups that can reach more patients and caregivers. Help us continue to bring people together through support groups with a donation today.

Tom Lantos Grant Applications Due Wednesday

Applications Due: March 25, 2015 

Named for one of the true heroes of the PH community, the Tom Lantos Innovation in Community Service Awards of $5,000, seek to create opportunities for those in the PH community to try out new ideas that hold the promise of more rapidly advancing our common cause. Learn more.