2006 Conference Story
Saturday, June 24, 2006
I came to the conference early on Thursday so that I would be here in time for the support group leader training on Friday morning. As soon as I got checked in I went directly to PHA to see if I could help in any way. I found Debbie Castro and she put me to work right away. I never had any idea how much set up a conference took and I only saw a small portion.
I met such great people right away and got to work the registration desk. It felt really great to help out and be a real part of the conference. Friday morning I went to support group leader training and they had some great ideas!! Friday afternoon I got to speak about working with PH. The funny part is I had to go on disability mid-May because I have been doing worse. I did speak about that and about protection under the Family Medical Leave Act. Then I helped to lead a support group on inhaled therapies only and we had Respronics and Cotherix join us to help answer questions. By dinner time, I was exhausted!! I've also meet some friends from the list servs and boards!! Even got some great resources from Fundraisers are fun! It was hosted by a very knowledgeable group that has done everything from a gala to a fun walk to a golf tournament. Can't wait to get home and plan my own!!
Saturday has been a long day too!! There is just so much to do and see. There are booths from Accredo, Caremark, Curascript, Pfizer, Lung RX, Myogin, Cotherix, United Therapeutics, Encysive, GlaxoSmithKline, PHA, PHA International, etc. They have such great information and are more than willing to help explain things. I got to see the Remodulin pumps and get a demonstration of how they work. I went to the PDE-5 inhibitors lecture and have to admit at times it was a bit over my head!! It was very informative and Dr. Adaani Frost is an excellent speaker. I have never seen her before and I was quite impressed.
The endothelin antagonists lecture was very informative and very hopeful for the future. Sitaxsentan is one of the study drugs that is going for FDA approval next month!! Ambrisentan, has a few years more to go before getting approved.
Prostanoids was also informative. They gave us a handout on Flolan, Remodulin and Ventavis and discussed them. Eproprostenol/Flolan was interesting. They discussed sanitary measures and how to care for a hickman. They also went into spotting an infection and what type of infections can happen.
My favorite part has been meeting so many patients!! I even met a patient with PH and MS (just like me)!! That was done by the help of United Therapeutics. I also have enjoyed hearing the questions brought up by other patients and hearing them share their experiences. I am very glad that I came to this conference, volunteered and spoke. It is a great experience and I've learned a lot.