The PHA Support Group “Scoop”

Winter 2011

Winter’s cold, rain and snow didn’t stop our PH support groups all across the country from bringing members together and hosting meetings.

  • Giving and Receiving! Winter is a time for holiday parties and gatherings for our support groups. Patients and caregivers had fun with “white elephant” gift exchanges at group meetings in Phoenix, Orlando and Puyallup, Wash. We love that the Eastern Panhandle, W.Va., group called it a “Yankee Gift Exchange” during its holiday brunch. The West Los Angeles group not only hosted a gift exchange, but raised nearly $500 in a silent auction at its annual holiday party.

  • You better watch out! The Fresno PH support group hosted its holiday party at the Old Spaghetti Factory and co-leader, Josh Daniels, dressed up as Santa Claus. The Twin-Cities, Minn., group also had a Santa at its holiday gathering in January.

  • Steppin’ Out. Our groups like to dress up and have special meetings outside of their usual community rooms.

    • The San Luis Obispo group hosted a dinner meeting at a cozy, home-style restaurant based out of Apple Farm, a well-known winery in the region.

    • The Southwest Virginia group continued its tradition of hosting an annual holiday gathering at the historic Hotel Roanoke.

    • The St. Louis PH support group hosted an end-ofyear party at Maggiano’s, and the North Texas group hosted its holiday party and gift exchange at Dave & Busters.

    • The Carbondale-Southern Illinois, Tampa Bay, Central Florida, Penn Presbyterian, Midlands South Carolina, St. Luke’s-NYC and Del Val, Pa., patient support groups had a great time celebrating the holidays, too.

    • The Hampton Roads, Va., group gave its annual holiday party the inspiring title, “Attitude of Gratitude and Sharing.”

    • Last but not least, the Newport Beach, Calif., support group holiday party always makes us want to relocate to the West Coast. Members celebrated at the 103rd Annual Newport Beach Christmas Boat Parade. The parade draws an audience of more than a million people and features richly decorated yachts sailing along the harbor.

  • Eat Right and Exercise. PH patients must take careful steps to ensure their activities are truly beneficial and safe. Our PH support groups are helping patients learn how they can integrate physical activity and healthy foods into their daily lifestyles.

      • The PH support group in York, Penn., brought in a speaker to discuss physical therapy.

      • Our Chicago group featured a speaker from Edward Hospital discussing pulmonary rehabilitation — a popular activity among PH patients.

      • The Greater Kansas City group hosted a talk on exercise as well.

      • Our Fort Worth, Texas, group hosted a wellknown nurse practitioner, Martha Kingman, giving a cooking demonstration and talking about low-sodium diets.

      • Our Cleveland, Ohio, group brought in Dr. Robert Chliz who discussed “Staying in the Groove,” which is code for exercise!

  • Cameo Appearances from Famous and Exciting Speakers! PH nurses and doctors may not be movie stars, but to the PH community, they’re well-loved and respected for their work in the field. Many groups had medical professionals speak during the last few months.

    • Doctors may give you a prescription, but sometimes laughter is the best medicine! The Upstate South Carolina group featured a Certified Laugh Instructor who had the group in stitches. Thankfully, not those kinds of stitches.

    • You have the right to remain informed! A corporal with the Forsyth County Sherriff's Department spoke to members of the Piedmont Area Support Group in North Carolina about keeping safe during the holidays.

    • Speaking of safety, both the Minn-Ia-KOTA group in South Dakota and the Treasure Valley group in Idaho had a speaker discuss emergency preparedness.

    • The Valley of the Sun group brought the president of the Caring Voice Coalition, Pam Harris, to Phoenix to talk about financial assistance and other patient support services from their organization.

    • A representative from the office of Congressman Adam Smith (D-WA) was the special guest speaker at the Des Moines, Seattle (WA) Support Group. Patients and caregivers shared their experiences about how the disease affects their lives and the group discussed the Tom Lantos PH Research and Education Act.


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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.