Anyone Planning to attend/work?

[grammie]

The National Conference is in Boston this summer:

From the Newsletter: Come to historic Boston for the Scleroderma Foundation’s 2010 National Patient Education Conference, "Where Revolutionary Ideas Begin," July 30–August 1. Located in beautiful downtown Boston at the Sheraton Boston Hotel, the three-day event will feature a variety of workshops and seminars hosted by leading scleroderma researchers and medical professionals. Keynote speakers include National Institutes of Health, Stephen I. Katz, M.D., Ph.D., who is Director of NIH's National Institute of Arthritis and Musculoskeletal and Skin Diseases.

Anyone planning to attend or know if we volunteer to work we can get in free/reduced price? Anyone know much about this...I being only 1.5yrs with SD.

Just trying to think ahead...........grammie

[steve201]

not me....but hey....give them a shout ..they may need volunteers badly..usually do at those types of functions...

Steve

[jeffn]

When I was first DXed I think the SDF conference was in Boston that year and I thought about it but did not really feel well enough to attend. Since then I have come to realize how anti AP the SDF is and as an AP guy I am not sure I would find their gathering helpful or hopeful. Thats just my opinion though and I think that if I had felt up to it that first year I would have gone and perhaps found something there I could have used. Now not so much.

That said for folks that are interested and were thinking of perhaps helping out it is worth a call. Particularly if they offer you some sort of deal in return for your labor. Grammie you are close by so if you could maybe swing a deal for a day pass or something what the heck. IIRC that was a issue for me back then in that I felt I could probably do a day trip but you had to sign up for the whole package. I was in way too hard of shape for a multiday commitment at that point.

[Cubby]

I don't get involved much with the Scleroderma Foundation as they do not believe in my 2 treatments, AP and Photopheresis. However, they still are a good bunch of people> Try calling 978-624-1243 to find out the answers to your questions.

[grammie]

Think I will give them a call. Decision can be made later and yes, I'm an hour's train ride and it is easy to get into the city. As a senior citizen, it's under $4 round trip! So I think I'll give a call.

Didn't know they weren't too happy about AP. Good to know that.

grammie

[Cubby]

The Scleroderma Foundation does not recognize AP or my Photopheresis. I was treating with one of their head docs and he told me to go find another doctor or give up the idea of AP and Photopheresis. I DID!

In the beginning they would not let us talk about AP. They erased threads of people who wrote about AP on their board. BUT, they did have a bit of a change of heart and did allow us to talk about it eventually. Liz Dorsett is their administrator and she was very good to us. She showed me how to start up this board, when they went over to Inspire.

My point is, they have some good people, just don't agree with some of the choices we made for treatment. So, don't be disappointed at the conference. They really do mean well.

By the way, if you met me today, you would never know I ever had Scleroderma unless you really really looked at my hands.

[jeffn]

While I would agree that some inroads have been made on the SDF - inspire board I have not seen anything that would indicate that the medical board of the SDF has changed their view. Perhaps they have but I am not aware of a change. Liz Dorsett was helpful with the move of the board that was subsequently closed by the administrator of that board. Looking back now it appears to me that the closure etc. was good for us, the folks that frequent this board so in the end it all worked out save for all the information that was lost by that closure and that part in very unfortunate. I did do an SDF walk last spring but don't think I will participate in one again for a number of reasons. I do find the SDF "corporate" attitude frustrating in that I believe that any money raised will not be spent on any AP research as they have totally discounted AP as a treatment. I don't believe that they should spend all their money on AP research mind you but to me it does appear to be counter productive to totally discount something that has worked for many. But then again I would bet that few if any of the medical board of the SDF actually suffer from SD and I do think that tends to put a different focus on the disease. At least it does with me. Just my two cents.

I certainly would not discourage anyone that thinks they might gain something useful at the conference from attending. If anyone here should chose to attend please share your experience with us, let us know what you found helpful or interesting. So Grammie hop on that train!

[grammie]

YOur comments help me understand why at the SD meeeting I attended up here, not one had even heard of AP. I was blown away by it for some of them have major issues. But the support group is from the SDF so that would explain to me why none had heard of AP.

Thanks for the insite into the organization and their feelings on AP....tis a real shame they aren't open to ALL types of treatment that seem to be working.

grammie

[Cubby]

My girlfriend and her husband come to visit me about once a month. She has scleroderma morphea and does AP. She was so happy with her result that about a year ago, she and her husband went to a local Scleroderma meeting. She and her husband told everyone her experience, how sick she was and how well she is now now. They were not interested and said their doctors say AP does not work. Isn't that amazing??

Anyway, the only ones who can educate them are US who are on AP. Soooo, don't give up going just because some of us are not fans of theirs. There is always someone who has something to offer.

[grammie]

I am glad I've gone for I see how far I've come!!!


grammie