The
Fourth California PH Forum was held at the Embassy Suites
in Burlingame, CA near San Francisco the weekend of
June 24-26. This program is sponsored by members of
the PAH community in California and co-sponsored by
the Pulmonary Hypertension Association. The goal of
the Forum is to provide a regional meeting where members
of the PH community can hear the latest information
on diagnosis and treatment, share ideas and encouragement
and discuss issues confronting PAH patients in the years
between PHA International Conferences. Volunteer organizers
Rita Orth , Judy Vucci, Cheryl Switzer, Shelley and
Pat Angulo were instrumental in the success of this
CA PH Forum. Additional sponsors included Actelion Pharmaceuticals,
Accredo Therapeutics, CoTherix, Encysive, Myogen, Priority
Health Care, United Therapeutics, Caremark and the Vera
M. Wall Center at Stanford University Medical Center.
Over 200 attendees were treated to sessions
by outstanding PAH doctors and nurses from Stanford
University, UC San Francisco, University of Southern
California, and UC San Diego Medical Center addressing
many current issues in PAH.
In addition, PHA provided speakers Carl
Hicks, Vice-president of Advocacy and Awareness and
Betty Lou Wojciechowski, Vice-president of Support.
Carl shared about his daughter who has PH and then described
the advances the PH community is making as a result
of speaking to members of Congress, including the recent
Kennedy Center event and the introduction of the Pulmonary
Hypertension Research Act. Audience members were excited
and encouraged about contacting their own congressmen
as well. Betty Lou shared about her family’s involvement
with PAH (2 sons and her husband have had the disease)
and the importance of becoming a vital part of the PHA
family. As a result, many became new PHA members. The
PHA table, manned by Jerry and Betty Lou Wojciechowski,
was a busy place for attendees, hungry for information,
who took advantage of information, DVD’s, PH journals,
brochures, and other handouts.
Sessions included information and ideas
regarding PAH basics; approved therapies for PAH; a
cardiologist’s viewpoint of PAH; surgeries including
transplant for PH; side effects of PH meds; traveling
with PAH; alternative healing therapies; new strategies
in the PAH treatment; current research and clinical
trials; diet; emergency situations; daily care; Medicare,
insurance, Social Security and disability); and emotional
and intimacy issues.
Two support group meetings held on the
final day of the Forum were for Caregivers and for Patients.
Deborah Martin, RN, Guy Orth, Chris Shellhammer, Betty
Lou Wojciechowski and Amy Yoney, RN led the caregiver
group . Loretta Ashby, RN, Rita Orth, RN/Patient, and
Jerry Wojciechowski, patient and editor of Persistent
Voices led the patient group.
Many
thanks to the following for providing information for
our community: Richard Channick, MD (UCSD); Ramona Doyle,
MD (Stanford); John Faul, MD (Stanford); Charles Hoopes,
MD (UCSF); Shelley Shapiro, MD (USC); Roham Zamanian,
MD (Stanford); Kim Bernstein, Esq. (director of ACCESS
program); Georgia Davis, RN (UCSF); Juliana Liu, RN
(Stanford); and Glenna Traiger, RN (USC).
In addition, patients and family members
were given the opportunity to help with PH Research
by donating a small blood sample for the Stanford University
Medical Center’s research team.
email
