Wednesday, November 26, 2014

Find Peer Support in PHA PHriends

Did you know that we have Patients, Parents and Caregivers available to help guide you in any questions you might have as you navigate living with PH. You can reach out with your questions anytime, and our PHA PHriends will gladly assist you. PHA PHriends are Peer support for your PH Journey. While they can't answer medical questions, they can point you in the direction of information and resources available to PH patients and family members.

Learn more

Happy Thanksgiving!

This Thanksgiving, all of us at PHA extend our thanks to the entire pulmonary hypertension community, from patients and families to medical professionals and researchers working to find a cure. It is a privilege to serve you.


Please note that PHA offices will be closed beginning at 2:30 p.m. ET today for the holiday weekend. We will reopen on Monday.

Tuesday, November 25, 2014

Find a Support Group Near You

Support groups are great for learning how to cope with pulmonary hypertension, interacting with other patients who understand and hearing information from PH experts. But did you know that they are also a way of giving back to the PH community? With more than 245+ support groups, there’s a good chance a group is meeting near you.

Find a support group near you

We Want to Hear From You!

PHA is conducting a research project to learn more about the challenges associated with PH. As part of this project we want to talk with people living with PH through telephone focus group discussions. To take part in a focus group, you must meet the following conditions:
  •     Diagnosed with PH
  •     Age 18 years or older
  •     Living in the United States
If you meet these conditions, we would like to invite you to take the 15-minute questionnaire about:
  •     How PH affects your life
  •     Thoughts and feelings you experience related to PH
  •     Thoughts on your medical care
  •     What you would like to receive from PHA
You can access the questionnaire here: https://cri-datacap.org/surveys/?s=sbkczUYIhA

You may have also seen the link for this questionnaire posted online. Please do not complete the questionnaire more than once.

If you have any questions or difficulties accessing the website, please contact Jessica Rafetto, at InternJessicaR@PHAssociation.org or 301-960-3479.

This information is approved by the George Washington University IRB Protocol # 081420

#GivingTuesday is a Week Away

With Thanksgiving just two days away, gratitude and giving back are on the minds of many as they gather at the holiday table. Here at PHA, we are so grateful to be a part of such an incredible community that gives so much every day in the fight against this disease. Today, we ask you to dig deep and give of yourself again.

This year, PHA is participating in #GivingTuesday, a global day dedicated to giving back to the causes that mean the most to you. When you support PHA on Tuesday, Dec. 2, you are supporting an organization and community that is changing lives and bringing hope to all those affected by PH.

Give to PHA in the spirit of the holiday season on #GivingTuesday and continue to spread hope to the PH community.

Monday, November 24, 2014

National Adoption Awareness Month

November is National Adoption Awareness Month! When a pulmonary hypertension patient is thinking about adoption, there are many health-related factors to consider. First, you must think about the implications of your illness during different stages in a child’s life. Will you be physically able to lift an infant or toddler? Will you be able to keep pace with a child learning to crawl or walk? Will you have the energy to keep up with an older child and get involved in their activities and school functions? These questions are difficult but worth discussing in a candid conversation with your partner and PH specialist.

PHA recently held a webinar on living with PH and family planning. Additionally, we have resources, written by Venessa Nunn, a social worker and PH caregiver, to help you get started if adoption is the path you are considering to start or expand your family.

Learn more

Proclamations for PH Awareness Month

All across the country, PHers are requesting and receiving proclamations in recognition of Pulmonary Hypertension Awareness Month. Proclamations open doors for PH awareness through press coverage and bring new partners to our fight.

The North East Oklahoma Support Group proudly displays its proclamation.
Know of a proclamation not on our list? Let us know so we can recognize your work and share it with the PH community. Contact Angelia DiGuiseppe to share a proclamation. Thank you to all our advocates who work hard to spread awareness throughout the year!

Name
Date Issued
Location
Arkansas PH Support Group 
(Awareness Month)
Nov. 15, 2014
Tontiown, Ark., Springdale Ark.
Tiffany Gunderman 
(Awareness Month)
Nov. 15, 2014
California's Fifth District
Joannie Yulie (Awareness Month)
Oct. 21, 2014
Monrovia, Calif.
PHA Midwest Chapter (World PH Day)
April 30, 2014
Illinois
PHA Midwest Chapter (Awareness Month, Hearts PHor Hope Day)
Nov. 21, 2014
Chicago, Ill.
Martha Gonzalez (Awareness Month)
Nov. 3, 2014
New Jersey
Kim Griner  (Awareness Month)
Nov. 1, 2014
Ohio
North East Oklahoma Support Group (Awareness Month)
Nov. 3, 2014
Oklahoma
Bob McNutt (Awareness Month)
Oct. 22, 2014
Pennsylvania
Merle Jones (Awareness Month)
Oct. 14, 2014
Pennsylvania
Diane Dauwalder (Awareness Month)
Oct. 11, 2014
Fort Worth, Texas


Learn moreRead the Chicago Proclamation