Stamford, Conn. PHA Support Group

October 30, 2007 Meeting Report

By Neeta Pai, Stamford SG Leader

October meeting attendees


Just wanted to give you all an update about our meeting tonight. First of all, I was concerned we did not have enough confirmations since I promised Dr. Roca we would have about 20 people. As of the night before the meeting, we only had RSVP’s from 10 people (of whom 4 were patients) in spite of sending information out to our local media and newspaper. However, the morning of the meeting completely turned things around. Calls poured in like crazy, so much so that we had standing room only!

Our local newspaper, The Advocate, printed the announcement on the day of the meeting instead of the Sunday prior. They also chose not to mention the fact that we were a PH support group and instead announced our meeting as a sleep apnea talk by Dr. Dominic Roca with complimentary dinner. I found this out when my friend, Mary, also telephoned me to confirm her RSVP and brought the copy of the Advocate's announcement! Some good things came out of it! We now have a new member from Neeta introducing Dr. RocaStamford with PH, on SubQ Remodulin, diagnosed 5 months ago. She was lonely and longing to meet other PH patients, she informed me. God is great!

We had 27 people total and what an excellent group of people they were; very interested to learn about PH along with insomnia and sleep apnea. They stayed till the end, listened, questioned and were happy to learn on a weeknight!

Pam Rotella responded to the group’s request to explain the basics on PH. "What a grand way to spread awareness," Pam exclaimed very happily! Both Dr. Roca and Pam Rotella, were terrific speakers. The meeting lasted until 9 p.m., past our scheduled time of 8:30 p.m., because everyone was shooting questions, until I had to put a stop to it! It was quite an educational night for PH awareness! Everyone went home very happy, loaded with information, and a couple even made appointments with Dr. Roca for Pam Rotellatheir sleep disorder testing!

I also gave out Pathlight asking everyone to become members (with PHA membership applications explaining the benefits of membership and an envelope for mailing, inserted in it) to every family. Talk about a day of surprises -- there was food ordered by Actelion and from Boston Market by United Therapeutics that everyone enjoyed, with leftovers for the Tully Center's cleaning staff. Thanks Actelion and UT for good food! Some of the guests wanted to know who and where from such a feast was provided by. 

October meeting attendeesFuture meetings: Our members gave the feedback that it would be nice to have a get to know each other meeting with no speakers at our next meeting. Our April speaker is Dr. Jeff Green, a cardiologist in Stamford who treats most of us. July, we are hoping to have Accredo set up a conference call with Access for disability and medicare information. October, perhaps we could talk about doing something in November for awareness month? I'm hoping we will have our membership grown (I know we have more patients in this area, since I have met 2 in pulmonary rehab) by next year.

 

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