This topic contains 5 replies, has 4 voices, and was last updated by  Kathleen Sheffer 1 year, 5 months ago.

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  • #12162
     Kathleen Sheffer 
    Participant

    PHA’s 2018 International PH Conference and Scientific Sessions will bring together nearly 2,000 people with PH (both newly-diagnosed and long-term survivors), families, caregivers, PH-treating health care professionals and researchers. PHA hosts the event once every two years, and 2018 marks the 13th Conference.

    This year Conference is June 29 to July 1, 2018, in Orlando, Florida, at the Renaissance Orlando at SeaWorld. You can still register for Conference here.

    I’ll be at this year’s PH Conference as a photographer to document this incredible three-day event. I’ve attended eight of the previous 12 Conferences as a patient, beginning in 2000 immediately after my diagnosis. At past Conferences I’ve met lifelong friends, learned strategies to improve life with an infusion pump, and grown hopeful in informational sessions about ongoing trials. Being surrounded by thousands of people who relate to my daily challenges feels incredible.

    After receiving a heart-lung transplant, I wasn’t sure I would ever attend Conference again. Most of the sessions wouldn’t apply to me and I might feel out of place knowing I no longer have the same disease. In the past, my parents and sister have accompanied me and benefitted from sessions geared toward caregivers. Though they will miss connecting with the other families we’ve grown close to over the years, they’ve each taken too much time off work and school to support me through my transplant recovery to make the trip (not to mention my sister lives in Germany now). It will be a new experience to go without them this time.

    I’m excited for the opportunity to give back to the community that inspired me to keep fighting. I can’t wait to capture the magic!

    Are you attending this year’s Conference? Please find me there and introduce yourselves! I’ll be the one pointing a camera at you. 

  • #12186
     Brian Gilbert 
    Participant

    My wife and I will be there! Can’t wait to meet everyone and learn. : )

  • #12188
     Charlotte Gilbert 
    Participant

    I’ll be there with a Brian! Looking very forward to meeting new people!

  • #12190
     Barbara Morris Linser 
    Participant

    I know it is late but I really want to attend . I have had PAH for 17 years and use O2. Also medical expenses have left me broke in forced retirement. I have never been able to attend. Does anyone have any ideas how I could get there… I live in Cincinnati. I applied for a scholarship, was turned down, then told I got one! Then disappointed at being told oops, no scholarship… I am a retired Occupational Therapist and I find the more I know the better I am able to function. Any ideas?

    • #12211
       Kathleen Sheffer 
      Participant

      So sorry to hear this, Barbara. You’re right that knowledge is power and Conference is a great place to learn. What a confusing rollercoaster you went through with the scholarship application!

      The PHA scholarship was the first thing I would recommend. I’ve seen other patients use crowdfunding to raise money to pay for the trip.

      Hopefully the next one will be closer to you (a few years ago it was held in Indianapolis). There may also be smaller gatherings in your area throughout the year. For example, the Southern Indiana O2 Breathe Walk in Jeffersonville at the end of September.

      Have you ever attended your local support group? There’s a meeting at the Bethesda North Outpatient Imaging Dr. Susan Weinberg Conference Room (10494 Montgomery Rd, Cincinnati, OH) tomorrow, Wednesday, Jun 13th from 6:00pm – 7:30pm (EDT).

      There are also monthly calls for patients and caregivers organized by the PH Association. Lots of ways to be involved with the community outside of Conference!

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