Message from your President

In the summer of 2001, Dave Edwards and I were communicating about the need for a nonprofit organization to represent hidradenitis suppurativa (HS) with goals to pursue research dollars and to educate the general public and medical professionals about HS. It was a dream to make this an actual reality. Our conversations led to my having numerous discussions with Sylvia Shawcross, the then Vice-President of H.I.D.E. International, concerning how to establish just such a nonprofit in the United States. Sylvia's advice led to our writing Articles of Incorporation and By Laws and making application to the State of Michigan and the Internal Revenue Service for recognition as a 501c3 charity. We became registered in the State of Michigan as a nonprofit in August of 2002 and received our official letter of recognition by the IRS of our 501c3 status on May 3, 2003. HS-USA was born!

Meanwhile, we were searching for a logo for our charity and there were several suggestions; Dave Edwards’ ‘The Crying Eyes’ was selected and we received the copyright for this, along with the phrase, ‘The Hidden Disease,’ in the spring of 2002. Pin Crafters, a small company in Vermont was chosen to make our 1-inch by ½-inch logo pin and the first 200 were ordered. M. Donaldson became our webmaster and in October of 2002, our excellent web site, hs-usa.org, was online and has since become a major information source for those inquiring about HS. During February of 2003, while waiting to hear from the IRS, Becky Hunter sent me her copy for a tri-fold brochure HS-USA. I added our address and copyrighted logo to the brochure, chose the color scheme to closely match our web site colors and ordered the first 10,000 to be printed.

In late March of 2003, we put together our first educational display board with graphic pictures and key verbiage and invested 22 hours in a booth at our county home show. A couple hundred brochures were passed out, along with much information about HS, and several people were surprised they knew someone with this disease. An interesting note is that the mother of Joycie, the owner of a Crohns Disease Yahoo group and also an HS sufferer, was one of our visitors. Since the initial HS exhibit, we have significantly upgraded our display and have had booths at two business expositions and repeated presence at our county show. Through December 31, 2004, we have distributed, in person and through the mail, over 26,000 brochures in the United States plus Canada, Australia and the United Kingdom.

In the latter part of 2003, we initiated our 24/7-crisis-hotline, managed by Tammie Ferris. The hotline has become not only an important additional source of information for doctors and newly diagnosed HSers, but also a means for HSers in crisis to speak with a fellow sufferer and gain much needed help. Please read our crisis hotline report for 2004.

We held our first national conference in Nashville, Tennessee, June 6-8, 2004. It was a huge success. Our keynote speaker was Dr. Samuel S. Thatcher, an internationally known researcher for Polycystic Ovary Syndrome and Director, The Center for Applied Reproductive Science in Johnson City, Tennessee. The attendees from the HS community came from as far away as California, Canada, Texas and New Jersey. They were able to experience the excitement and joy of meeting with fellow sufferers face-to-face. The second annual meeting of the board of HS-USA was held, with some changes to our By Laws approved, along with the absorbing into HS-USA of the Petition Committee. An additional committee was initiated for the future pursuit of grants for education and research. Other committees are in the works for 2005. How have we been able to accomplish so much in such a short time since our inception? HS-USA has a very knowledgeable and active Board of Trustees. In addition, we are fortunate to have many dedicated volunteers from the HS community at-large.

In 2005, we are holding our second annual conference in Brighton, Michigan. We will be facing many challenges, the greatest of which is fund raising. Since 9/11 and the persistence of a variable economy, all charities, including ours, have suffered. To members of the HS community: have a happy and pain-free 2005!

R. Vix Kennedy, President & CEO