The Lady Lake, Florida meeting held on Friday March 2, 2001 was rather intimate with only six of us present, but as always the support and camaraderie that was felt made the meeting worthwhile.
The Columbus, Georgia Conference held on November 11, 2000 was attended by 18 of us. Attendees came from Georgia as well as Florida and Tennessee. All three quilt panels were present and made quite an impression on those who saw them. The group photo is (finally - I am soooo sorry!!!) now available at the link below.
The HSP patient luncheon held in Providence, Rhode Island on Saturday October 28, 2000 was very successful. Dr. Dagmar Tapon spoke to an audience of 16. The group photo is now available from the link below.
The Third Annual Philadelphia Conference was held on October 1, 2000, once more at the Adam's Mark Hotel. There were 24 people from Connecticut, Delaware, Maryland, Michigan, Mississippi, New Jersey, New York, and of course, Pennsylvania. Dr. Fink filled us in on the latest research as well as clarified some differences between the diagnoses such as MS, CMT, ALS, CP, etc. versus HSP. We were more than fortunate, yet again, that my aunt was available to put the conference on video. The video is a total of 3 hours and 15 minutes and they are now available for $12.00. If you are interested in receiving the tape, please send me an email.
The first ever International HSP Symposium, held May 25-27, 2000 in Ann Arbor, Michigan was a rousing success with approximately 200 attendees including both patients and researchers. We in the patient community cannot thank the researchers enough for joining us and sharing information and support. Our community is growing on a daily basis and working together, I am convinced that we will overcome the challenges that face us.
International Conference Shirts are now available. Check out the link below!!
The Orlando Florida Conference, held on February 20, 2000 went very well with Floridians attending from as far south as Miami and as far north as the Jacksonville area - as far east as the West Palm Beach area (I know that sounds funny, but it's true - and definitely East!!!) and as far west as the Fort Myers Beach area. There was a total of 18 of us. It was held, once again, at an Adam's Mark Hotel and as always they did an excellent job!!! Once more, Dr. Fink did a great job of filling us in on the latest research material and explaining the ins and outs of HSP. The Group Photo will be posted just as soon as I get the film developed!!!
The San Francisco Social/Conference on Sunday October 17, 1999 at the Marriott - Fisherman's Wharf was successful with 26 of us in attendance from four states and Canada. Group photo is finally available at the link below!!
The Washington D.C. Conference was held on Oct 1, 1999 at the Double Tree Hotel in Arlington, Virginia, just outside of Washington D.C. This conference was held in coordination with the Annual NORD Conference, thereby offering information on HSP as well as topics hosted by NORD that are universal to rare diseases. The conference was attended by Dr. John Fink from the University of Michigan who updated the current HSP research information. Group photo is now available at the link below.
The Second Annual Philadelphia HSP Conference held, once more, at the Adam's Mark Hotel on August 7, 1999, was a success. There were 21 persons from four different states and it included a one hour conference call with Dr. Fink and Sharon Neumann as well as discussions regarding various exercises.
Group Photo from the Philadelphia Conference 1998 is available at the link below!!!
Group Photo from the Philadelphia Social 1999 is now available at the link below!!!
Group Photo from the Washington D.C. 1999 Conference is now available at the link below!!
Group Photo from San Francisco 1999 is now available at the link below!!!
Links to other sites on the Web
The HSP/FSP Page