The PHA Support Group “Scoop”

Fall 2011

When you think of a “Support Group,” do you ever think “laughter yoga” or “game night”? Well, that’s what we’ve got! We’re not trying to brag or anything, but PHA’s support groups are AWESOME! Don’t believe us? Check out what some of our more than 235 support groups have been up to this fall.

  • What the heck is “therapeutic laughter yoga”? The dozens of patients and members of the Minn-Ia-Kota PH support group in Sioux Falls, S.D., weren’t sure, but they left the meeting with tears of laughter running down their faces! The support group leader, Jan Howd, looked up “yoga” in the Yellow Pages and found this particular type of yoga intriguing. A couple of phone calls later she found someone to give a free talk and demonstration to the group!
     
  • What would it be like to have had PH in the 1980s? PHA founding member Dorothy Olson knows that firsthand. She shared her story of courage, hope and success as a long-term survivor (diagnosed 1978) with the Tampa Bay Area group.
     
  • November is not only PH Awareness Month, but it is also Caregiver Appreciation Month.
    • The UPHS Penn Presbyterian, East Central Florida and DC Capital Breathers PH support groups celebrated their caregivers by offering resources, information and recognition for their dedication.
    • The Puyallup, Wash., group had a twist on thanking caregivers: they thanked their patient leader for all of her support. Charlotte McCabe cares for her group as if it were her own family. Co-leader Ric Franzen presented her with a certificate of appreciation and a gift on behalf of the group!
       
  • Want more time with your PH specialist or medical professional? Many of them take time to provide medical education at support group meetings.
    • The Southwest Virginia group brought Dr. Steven Nathan to discuss transplant and PH.
    • The Tri-State PH group in Cincinnati brought Peter Engel, MD, FACC, to discuss right-heart catheterization.
    • The Charleston, W.V., group featured the clinical director of the PH Clinic at Mayo, Dr. Robert Frantz, who discussed “Long-term PAH Management.”
    • The PH support group of Piedmont, N.C., tackled PH and over-the-counter drugs.
    • The Carbondale-Southern Illinois group focused its fall meeting on PH and connective tissue diseases.
       
  • Not only can you find medical information and support, PHA’s support groups also provide practical resources and education on issues like insurance and government disability benefits.
    • The Orlando and Brevard County groups brought representatives of SHINE (Sharing Health Insurance Needs of the Elderly) from their state’s Department of Elder Affairs.
    • The Lehigh, Penn., group invited a public affairs specialist to talk about Social Security Disability.
    • The South Carolina Midlands group revealed the “mysteries” of Medicare open enrollment and medical insurance.
    • The group in Sarasota featured a Caring Voice Coalition leader speaking about financial assistance and insurance.
       
  • Our groups often meet for fun and support!
    • Central Florida, Oklahoma City and New Hampshire PH groups organized luncheons.
    • New Haven and Syracuse groups held “Meet and Greets” for members to get to know each other.
    • Treasure Valley, Idaho and Inland Empire Southern California groups were among the many groups to organize potlucks where patients could showcase their recipes and culinary talents.
    • The Salt Lake City support group had an ice cream social while learning more about advocacy and the Tom Lantos PH Research and Education Act.
    • The York, Penn., group hosted a game night.
    • Several groups hosted first meetings, including the Richland, Ore., and New York Grupo en Español.
       
  • Even if you’ve had PH for awhile, there are always new things to learn and ways to improve your life.
    • The Niagara Falls group tackled tips for coping with a chronic illness.
    • The North Central Florida group hosted a respiratory nurse to discuss traveling with oxygen.
    • The Santa Barbara group brought in local PH authors from the community.
    • Exercise physiologists and other experts spoke at both the Michigan Metro Detroit and Puyallup group meetings.

 

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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.