PH Awareness Month Highlights

PH Community Raises Awareness Across the Country Check out a new highlight of PH awareness activities every couple days during PH Awareness Month. See all the great activities your fellow PHers are doing and Get Involved!

Betty Mooneyhan of the Mid-South and Vanderbilt PH Support Groups set up a booth with Judy Corzine of Accredo in the Lobby of Portland Medical Center in Portland, Tenn. for PH Awareness Month.

Nov. 25-26: Putting Emotion into Action Ever since losing her teenage daughter to pulmonary hypertension in 1994, Arlene Wood (far right with Raye Bohn and Carol Morrison) has been collecting teddy bears to give to children who need something to cuddle and named the project after her daughter, "Heather's Teddy Bears." During Pulmonary Hypertension Awareness Month Wood organized an art exposition, in collaboration with local agencies and clubs, at which the admission fee was a teddy bear. The art exposition was also able to distribute information and raise awareness about PH thanks to Raye Bohn, PH patient, advocate and activist. Read news coverage!

The Fourth Annual Update in Pulmonary Hypertension was held in Cambridge, Mass., the weekend of Nov. 17. PHA Vice President Adrienne Dern spoke to the patients at the meeting on behalf of PHA. “Whether physicians are sharing knowledge with each other or discussing concerns with the patients in attendance, the spirit of working together against PH was very evident,” she said of the meeting. Jointly sponsored by Tufts University School of Medicine and Tufts-New England Medical Center (NEMC), the conference was led by SLC member Dr. Nicholas S. Hill and Drs. Ioana Preston and Kari E. Roberts from Tufts-NEMC. PHA’s Scientific Leadership Council was very involved in this event, as three more of its members, Drs. David B. Badesch, Richard N. Channick and John H. Newman, facilitated the sessions. Learn more about PHA's Scientific Leadership Council

In recent years, medical professionals throughout the nation have been providing education to their peers, as well as to patients and families. On Nov. 17 and 18, PHA was privileged to be part of two of these sessions. PHA Scientific Leadership Council members, Nazzareno Galie, MD,Michael McGoon, MD, Harold Plevsky, MD andVictor Tapson, MD and PHA's president, Rino Aldrighetti were among the 45 faculty for the Pulmonary Hypertension Summit 2006 at the Cleveland Clinic. The event was chaired by Raed Dweik, MD and Omar Minai, MD. Over the 2 days of the Summit, about 250 people attended from 5 countries and 13 states. In addition to about 100 patients and care givers, participants included physicians, researchers, nurses, physician assistants, social workers, pharmacists, respiratory therapists and exhibitors. Besides contributing to PH education forward through this rapidly growing event, the Department of Pulmonary, Allergy and Critical Care Medicine focuses on pulmonary hypertension in all its Awareness Month medical education programs. At the same time, in Boston the Fourth Annual Update in Pulmonary Hypertension was being sponsored by the Tufts University School of Medicine and Tufts-New England Medical Center.  Hosted by PHA Scientific Leadership Council member Nick Hill, MD this event was also a great success and will be the subject of a future Awareness Month highlight. Check out our calendar of Upcoming PH-Related Medical Events.

Liberty Tilleman-Dick, sister to PH patient Charity, speaks to a standing-room only crowd PHA President Rino Aldrighetti welcome’s guests Nov. 15: Thanks to the efforts of the PH community, PHA’s 3rd Annual Congressional Luncheon was a huge success.  105 participants, including many Congressional staff and several Members of Congress, attended. One guest described the luncheon as one of the best attended events of its kind she had ever seen. Patients and supporters, industry representatives, and Congressional staff alike benefited from the medical overview and personal stories provided by this year’s speakers. Contact your members of Congress about the PH Research Act

Nov. 11-15: PHA staff members Angie Slubowska (right) and Justine Elliot exhibited at the American Heart Association Scientific Sessions conference in Chicago Ill., November 12-15.  PHA distributed a variety of educational materials to physicians and nurses who stopped by the booth, and invited them to join and become more active in the PHA community. View calendar of upcoming PH-related medical events

Nov. 11: Over one hundred attend the John Hopkins "Journeys in PH" Conference in Baltimore. More events taking place throughout November Right: Children of PH patients and PH volunteers play together and hang out during the Journeys in Pulmonary Hypertension Educational Conference hosted by the  John Hopkins PH Center.

Oct. 28: The North Texas PH Support Group organized their 4th Annual PH Symposium Luncheon. For the first year, they made this event a fundraiser with a goal of raising $3,000. The checks and proceeds for their silent auction are still coming in! PHA Volunteer Services Director Debbie Castro delivered the keynote address and screened PHA’s Faces of PH Campaign DVD, which was extremely well received. Gasps were heard twice during the talk—once when they heard that Jack’s golf tournaments have brought in $1 million and at the end of the Faces presentation when the statistic was shown overhead that 1.5 million people were reached through the 10 city media push. The symposium was highlighted by a panel of top PH specialty physicians led by Dr. Fernando Torres of UT Southwestern Medical Center and provided an educational and scientific session on Pulmonary Arterial Hypertension to patients, caregivers, and the medical community. See how easy it is to organize your own PH event

Oct 14: Joanne Sperando-Schmidt on the Long Island, NY Fun Walk for a Cure: "It went really well… we had over 200 people. The weather was perfect autumn weather and the raffle and sale of items generated some really nice cash!  George [Stack] brought his race car (pictured, right) and kicked off the race by starting his engine.  Donations are still rolling in, so I guess it'll be a few weeks until we know our number."

 

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