Community COnference in NY

[FlakeyMatt]

One and all,

I attended the NPF Community Conference in NYC and wanted to tell people that when one is in your area take the time to attend.

A presentation was made by a Dr. Cather from Texas who was a very knowledgeble and the crowd liked here. She went over the various types of treatment options and faced an extensive Q&A period from the attendees.

Reps were there from the Pharma companies to answer questions about there products.

A fellow P sufferer by the name of Tena Brown spoke breifly describing her efforts as a "Psoriasis Patient Advocate" She is extremely charismatic and people were enthused to speak with her during the "social hour".

THE BEST THINGS ABOUT IT was being a room with roughly 100 P/PA patients was somehing else. I mean were else could one us go and have the people with "normal" skin be in the minority! The meeting served a similar function as these message boards. We are all able to mingle exchange war stories and provide support.

I veen got to meet someone I have "met" on the message boards. HI ROSY! MIKE K. did you make it to your graduation party! Sorry, we didn't get a chance to meet.


FlakeyMatt

[MikeK]

Hi Matt,

Yes. I was there! You're right the NPF did a wonderful job. I learned a lot and I've had p for over 39 years! I join you in recommending that everyone try to attend one of these Community Eduction Meetings when it comes to your city. I introduced myself to the NPF staff and was treated like royalty. I don't know who was more excited about finally getting to meet -- them or me. They told me that this was on of the best attended Community Education Meetings they've ever had. They were so proud of themselves and rightly so.

I got there around noon and had hope to meet you and the other people from the tri-State area that I've met on line. I got the chance to talk to several very nice people, but I didn't run into anyone that I "knew". Unfortunately, I had to skip the social reception because I had to run to the Port Authority to catch a bus for home, so I could drive in all that rain down to Point Pleasant for graduation party. That was the only disappointment in an otherwise very pleasant and informative day. (I had a good time at the party once I got there.)

Mike

[PJ Leary]

Hi Matt & Mike,

I am so happy to hear you both got to the meeting and enjoyed it. I am thinking it sounds a lot like the forum they put on here in Raleigh, which was excellent.

Mike, I had a similar experience in meeting NPF staff that you did...aren't they a trip? I came away from the meeting hre thinking that everyone should get to be a celebrity for one day in their lives!:p I can certainly understand their high regard for you and your contributions here on the boards.;)

Sorry to hear that the two of you didn't connect..lol. Matt, I agree that it is an important experience to be around other folks with p, especially if you haven't had the chance to before. It can be a very important experience.

On that note, I join Matt and Mike in encouraging others to attend meetings in your area.

See ya'll in Chicago!:cool:

[Zara]

I was very sorry to not make it. Between my eyes and having a lot of sleep problems during the week, I wound up sleeping until 2 PM. I don't know if you caught my post in the other thread but I was recovering both from a laser procedure done on my eye on Wednesday (not LASIK) and from having my pupils stuck in a halfway dilated position from a medication I was taking for a few months, but recently had a dose increase on. As a result my vision was very blurry and my eyes hurt like heck. I wasn't in a mood to be around anyone.

I stopped that med Friday morning, and today for the first time have vision getting closer to normal.

I'm sorry to have not been able to meet anyone. Maybe we can plan a social get-together for people in the area at some point during the summer! I did notice that there is a NYC support group.

[makeitgoaway]

Mikek-

If we ever have a rain-free weekend, let me know when you will make it to Point Pleasant again. It would be nice to meet you in person. You have given me a lot of great advice, the least I could do is buy you a drink at Martells.

Steve:cool:

[LynneHella]

I love hearing this kind of thing. Thanks, FlakeyMatt for posting this.

I live in MA and there aren't any support groups in my area. In fact, the closest one is in NY (at least a five hour drive for me on the Cape). After a lot of suppport from my husband, (and a lot of thought on my part) I finally contacted the NPF last week about starting a support group in MA.

I have to admit that I'm a little nervous about being in a support group. It's hard to put into words, but I guess, I'm a little scared about giving the P and PA such an open presence in my life. I know, it's already there and there's nothing I can do about that, but for the first time, I'm not trying to deny it's there or hide from it. I feel like, by talking about it with others (I haven't even really talked about it with my immediate family until recently and I've had it for 15 years!), I'm really confronting the disease. I haven't done that before now. Sorry, I'm making this way too dramatic!

Anyway, it's good to hear from people who get a lot out of the support groups. After reading your post, I'm really looking forward to getting the info from the NPF on starting a support group in my state.

Thanks again!;)

Lynne

[OS7]

I think I mentioned it on one of the boards, but I attended the Atlanta meeting on June 14 and volunteered to speak there. It was such a freeing experience to do so. The NPF treated me and my family members like royalty. It was also nice to bring my family and let them hear and see what P and PA were like for others.

I've spoke to crowds before in my job or at church, but there haven't been many topics as close to my heart as P/PA. I walked away with a new found freedom and more self-confidence.

If you have the opportunity to attend, you should. It was great.

Jill

[MikeK]

Hi Everyone!

Joanette: I'm glad that you're feeling better. :) They introduced the woman who runs the NYC Support Group. They currently meet once a month on the Upper East Side, but they're thinking about changing the format so that they meet every other month in Brooklyn. (The Upper East Side location is actually very convenient for me. I may check it out in the fall. I'll let you know.)
I agree that it would be fun for those of us who live in the area to get to meet. :cool:

Steve: It's my pleasure to help. :cool: I'm usually in Point Pleasant on Friday's, but I sometimes come down on the Weekends too. (Hopefully, it will stop raining one of these days.) I'll lt you know. It would be great to meet you. :cool:

Mike

[FlakeyMatt]

It would be cool if we could all get together.

MIkeK, both myself and "Rosey" were trying to find you and it turned out we were both from the Garden State

MikeK and Steve if you guys hook up let me know.....I have spent my share of Greenbacks at both Martell's and "Jenks"


LynneHella don't EVER feel like you are being to dramatic about P. That's what these boards and us are here for!


Never give up guys! FlakeyMatt

[Zara]

I live on the eastside, but downtown, around 14th & First Ave. (I'm in Stuyvesant Town if you happen to be familiar with that.) Brooklyn is probably closer, but I don't think that I've been there in at least 5 years.

[MikeK]

Hi Everyone!

Joanette: Did someone say Peter Cooper Village? I live, work and do about 80% of my socializing in New Jersey, but I know the City like the back of my hand. (I've lived in Hoboken all of my life. The City has been part of my "turf" for as long as I can remember. ;) )

Matt: I'm sorry that we didn't get a chance to meet at the conference. It would be great if we could get together. :cool: If not Down the Shore, then maybe in the fall when things start to quiet down.

Mike

[jperng]

Dame it.. I so totally missed it. Had a job down in Atlanta.. anyone can tell me what sort of new info did you find out at the Meeting?

Thanks a Million