The PHA Support Group “Scoop”

Summer 2011

With more than 235 support groups nationwide, meeting monthly to quarterly, we’ve got some great stories from support group meetings to share. This new Pathlight feature will give you a snapshot of trends, news, views, and the latest and greatest from support group meetings occurring around the U.S.! Get a firsthand look into all the great ways PH patients are taking advantage of being a part of a support group.

  • Chair yoga has been all the rage with support groups in the South! We’ve seen chair yoga meetings in South Carolina and now in Pensacola, Fla. Support group leader Donna Head told us she “had a blast”and is “now hooked on chair yoga!”
  • Did you hear? Fort Worth and Dallas, Texas, groups had a joint meeting near the Cowboys stadium. In spite of the temptation to go straight to the game, the groups had more than two dozen patients and caregivers in attendance and even picked up some new members!
  • Dozens of support groups across the country got a healthy dose of advocacy by participating in PHA’s National Call-In Day. For one, Del Val, Penn., Support Group members called their Congressionals representatives throughout the day and felt accomplished after speaking with the offices of so many members of Congress. The Newport Beach, Calif., Support Group also had a great experience with advocacy that day. The group leader, Chris Morres, says she “called Senator Feinstein’s office and was shocked to hear they had already received several calls!”
  • Safety first! The Piedmont Area Support Group in North Carolina invited a sheriff speak at a recent meeting to discuss how to handle different safety situations in the surrounding areas. According Diane Ramirez, one of the group leaders, the sheriff was “a very funny speaker” and the group had a fantastic time: “It was nice to be in the meeting talking about other life issues — not just PH!”
  • Rainy weather and bad drivers in the streets of Washington, D.C., didn’t wash out the D.C. Capital Breathers support group meeting. This group had a great turnout and members were very interested in hearing the speaker talk about his experience as a pastor, a cancer survivor and a caregiver to Kim Ford, PH patient and support group leader.
  • The Morristown, N.J., Support Group had phenomenal turnout for its April meeting. About 30 people came together for a talk by a Caring Voice Coalition expert. Did you know this organization helps PH patients with services like insurance counseling, legal assistance for disability applications, peer mentoring and need-based financial assistance? More information
  • The Fresno, Calif., Support Group had a great turnout at its March meeting. With a speaker from Stanford Medical, the group had 34 people show up, including three newly diagnosed patients. What a great example of what PHA support groups are all about — bringing support to both new and veteran PH patients!
  • Chew on this: The Buffalo, N.Y., Support Group is taking nutrition to a new level. The group leader, Jaclyn Burdick, is collecting low-fat, diabetic-friendly recipes to share among group members.
  • Two leaders from New York and Ohio are coordinating the creation of quilts to be showcased at PHA’s 2012 International PH Conference. One quilt will pay tribute to the memory of those we have lost to this disease, and the other will focus on support groups. Talk about a great way to “weave” together the common “threads” among support groups!
  • The Rocky Mountain Support Group of Denver got down to business! They welcomed PHA Board Member John Hess as the speaker for its March meeting. John, whose son is a 12-year-old PH patient, told the group about the latest in PHA news, research updates, and future goals for 2011.



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