How To Live With Pulmonary Hypertension
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- Mary George
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1 PH Patients and Families Education Forum A Program of the Pulmonary Hypertension Association Medical Education Fund Atlanta, Georgia June 20, 2015
2 PULMONARY HYPERTENSION: THE OTHER HIGH BLOOD PRESSURE PHA Update June 20, 2015 Sally Maddox PHA Board of Trustees Secretary Support Group Leader
3 In The Beginning
4 Ending Isolation When I was diagnosed after college, I lived for ten years without meeting another patient. I will never forget going from my home in Pennsylvania to the closest PH support group. It was in Chicago. When I walked in the door and I saw seven other patients, my life was forever changed. Bonnie Dukart, 1998
5 245+ Groups Nationwide!
6 Thanks to Support Group Leaders Average attendees and upwards of leaders and co-leaders in our network Average of meetings in a month Support groups are often the entry point for involvement in PHA activities 8 of 24 Board members are leaders of Support Groups Many group leaders rise in the PHcommunity
7 Your Impact! PHA support groups have significantly assisted both patients and caregivers with the management, education and tools to move forward with living with PAH
8 Greater Atlanta PHA Support Group Remember, if you ever need a helping hand, you ll find one at the end of both of your arms. As you grow older, you ll discover that you have two hands, one for helping yourself, and the other for helping others. -Audrey Hepburn
9 A Little About Me: Married 18 years have step son that is 22 years old and have my chi-weenie Slash Teach alternative school/special education for last 15 years Working on my Educational Doctorate in Math entering dissertation phase Love riding the motorcycle with my husband! Diagnosed May years old CCB s Treated at Mayo, Barnes Jewish, currently at Emory PH worsened in Pneumonia Started on Flolan and transitioned to Remodulin in 2012 I have tried every pump(and or treatment) imaginable to date
10 PHA Involvement Started volunteering at PHA Conference in 1994 Stone Mountain, GA Have attended and volunteered ever since. Started Greater Atlanta PHA Support Group in 1997 Elected to Board of Trustees in currently serving as Secretary Started the GA Fun Walk in Just celebrated 11 years
11 In Our Most Difficult Times
12 PHA Serving Our Community Patient & Caregiver Services 245 Support Groups PHA Classroom PHA on the Road Patient to Patient Support Line Online Discussion Boards, Groups, Chats Caregiver Mentors Pathlight PHA News Find a PH Doctor Empowered Patient Toolkit Insurance Guide Pulmonary Hypertension: A Patient s Survival Guide
13 PHA Serving Our Community Services for Medical Professionals PHA Preceptorship Program PHA Online University PHA Medical Education On- Demand Program PHA Medical Meetings PH Clinicians & Researchers PH Professional Network Advances in Pulmonary Hypertension
14 Medical Education: Allied Health PHPN Symposium: Sept , 2015
15 International Conference & Scientific Sessions Largest PH meeting ever held 1,580 registered From 30 nations Scientific Sessions Medically-led sessions Patient-led sessions International Leaders Symposium June 20-22, 2014 Indianapolis, Indiana, U.S. Next Conference June 17-19,2016 Omni Dallas, TX
16 $15,000,000 + in research commitments since Five distinct peerreviewed research programs Robyn Barst Pediatric Research Fund Donations leveraged through partnerships with NHLBI, American Thoracic and American Heart Supporting Leveraging & Expanding Research
17 Earlier Correct Diagnosis a Must! Misdiagnosis due to incomplete evaluation or misinterpretation of data Inappropriate treatment - Treating wrong kind of PH - Choosing wrong treatment for PAH patients - Inadequate use of medications in PAH patients Inadequate longitudinal follow-up - Failure to recognize expected clinical progression in timely fashion Delayed referral to tertiary care Centers
18 PHA-Accredited Pulmonary Hypertension Care Centers (PHCC) To date, 26 PHCC centers have been accredited in the United States for adults and 2 PHCC centers for Pediatric patients.
19 PHCC Mission Statement The purpose of the Pulmonary Hypertension Care Centers (PHCC) initiative is to establish a program for accreditation of centers with special expertise in pulmonary arterial hypertension, with the goal of improving overall quality of care and outcomes in patients with this life threatening disease.
20 The Pulmonary Hypertension Association Ranked as a 4-star (top level) charity for the past 10 years by Charity Navigator. Less than 1% of the (49) 5,400 rated charities have achieved this distinction.
21 PHA Serving Our Community Any potential realization for a PAH cure will surely be the manifestation of this exceptional organization Charles Burger, MD PH Physician Mayo Clinic
22 PHA s Ongoing Pledge of Support At PHA, we believe that anyone touched by this disease has the right to fight back as much or as little as health and interest allow. Our job is to make that possible. Rino Aldrighetti PHA President & CEO
23 Want to Fight Back?
24 Everything You Need
25 Special Events Central Fund Corporate Committee established SECF 2009 Sponsorship offered at four levels - Platinum $ 100,000 - Gold $ 75,000 - Silver $ 50,000 - Bronze $ 25,000 Provides seed money grants for grassroots level special events Committee screens proposals for acceptability prior to awards
26 Activities Supported 2013
27 Empowered to Fight Back Shari Caffrey of Race 2 Cure PH: Happily, I got to talk about Taylor, which was very therapeutic. My grief started turning. Although emotionally difficult at times, it was quite cathartic. I have not completely accepted Tay s passing yet. But, I do have hope for our future and for the future of PH research.
28 2013 Special Events Metrics Gross $1,004, NET $750,894.03
29 The Wake Up Call The life cycle of a pharmaceutical is not unlimited you could see significant funding reductions in the years ahead
30 PHA Chapters SFO CHI NYC HOU
31 Hope is NOT a Method!
32 I ALWAYS WONDERED WHY SOMEBODY DOESN T DO SOMETHING ABOUT THAT. THEN I REALIZED I WAS SOMEBODY. -LILY TOMLIN
33 Don t Take PH Lying Down! Rocking the oxygen as we cross over Bear s Tooth Pass July 2014 Montana/Wyoming Mountains Elevation 10,947 feet
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