If you turn on a light switch for a room to illuminate it and then the television, do they both use the same amount of electricity? The answer is no, they do not.
It felt as if a small village illuminated with full power at the Annual Patient/Doctor Meeting held at the Sheraton Society Hill Hotel in Philadelphia. When I arrived, my room was ready. So I did some quick sightseeing with Janet [Segall, IPPF Founder]. Philadelphia is historic on its own; the crack in the liberty bell like the crackle of electricity was something of which to be in awe. When you combined the location, the group of rarities that we all are, and the wonderful speakers and sponsors, I have to tell you, popcorn was popping! What a way to get in the mood!
Speaking of sponsors, a heartfelt “Thank You” goes out to Centric Health Resources, AxelaCare, Crescent Healthcare, National Rehab, and Alwyn Cream! Their continued support helps meetings like this one reinforce the Community concept!
Friday night’s mixer was very relaxing. Those in attendance could mingle with each other, the doctors, the sponsors, Molly [Stuart, CEO] and Will [Zrnchik, Director of Communications]. I chose to sit with a small group of women for a bit, then went from table to table and began just asking people who they were.
One big table had me repeat the names, and I did pretty well until the last one. I blamed it on the prednisone. I introduced some to others that were in search of answers to some questions. I sat back and observed the camaraderie of the group. Intense conversations and laughter filled the air. Will was on spot when I whipped out my camera – as if on cue, he turned his head and smiled.
Saturday’s breakfast was magnificent, and I felt so much better once I had my café mocha with a shot of hazelnut. Oh, I was a happy little camper and ready for anything with a big old smile on my face. Everything seemed as if it was in its own perfection. The booklet with the weekend layout was great in the sense that you could follow along. I sat in the back, listened to Dr. Grant Anhalt’s presentation, and understood it. Please allow me to take a moment and thank whomever it was that came up with the idea of espresso in the morning before medical doctors and panels spoke. I believe Gloria Papert did an excellent job of keeping the times allotted for speaking. She is such a jovial woman; you could not help but smile when she spoke to you.
The breakout sessions were clearly marked, and I chose to listen to NDRI, which stands for National Disease Research Interchange. A lot of interesting information on donating tissue and blood samples that is extremely important in order to one day have a cure. I grabbed a booklet, but have not had time yet to fill out the information. I, for one, am totally for this. My skin comes off with the PV anyway, so I am not missing anything.
The Awards Luncheon was tasty! Dr. Jean-Claude Bystryn received the Founder’s Award and Janet accepted it on his behalf. I personally would like to wish him a full recovery from his illness. I have only met him twice, but can see that he has dedicated his life in hope of controlling these complicated diseases.
I have to admit I was floored when Molly announced an award for my writings. I was not expecting anything of the sort, but it meant a lot. I just have a gift of gab. Somewhere I can hear my mother telling me to keep quiet, but she is smiling in her heart.
When lunch was through, Dr. Ani Sinha gave a very informative lecture on Why Do Patients Have Flares? My second cup of espresso kicked in during his question-and-answer session. Dr. Dave Sirois had a breakout on Oral and Dental Care. Something interesting with Dr. Sirois: During the raffle, he whipped out about a dozen tickets. That was ok, except I noticed he did not put the other halves in the boxes. I informed him of this and his statement was, “Well that explains why I never win anything!”
Saturday evening was “on your own” or a movie night and many people decided to go out, which was nice. I ate dinner with a small group and enjoyed their company immensely. I love to hear stories as well as tell them. Brian Cleary from AxelaCare was like a personal map/tour guide because Philly is where he lives.
I felt for Will, he was running around like a mad man all weekend and his coffee was usually cold. He gave up his animal printed tie to me to add as a band for a sundress I am making. He just had to explain it to his other half. Wonder how that went… 
Anyway, bottom line is that the lights did not go out. With a walk to Penn’s Landing to see the old masted ships in the harbor, I went back to the hotel and had a “special” decaf nightcap. Unfortunately, I had to leave early Sunday to come back to my family. It was nice to run away for a weekend and share something that so few of us know.
To my other family, thanks for the laughs, the conversations and the fun. You are the entire “crack in my bell” — but the electricity is what keeps us connected.
