1995 – Who is American RSDHope? American RSDHope’s Mission Statement is as follows;
American RSDHope – Provide Hope, Help, information, and Comfort to patients with CRPS (Complex Regional Pain Syndrome), formerly known as RSDS (Reflex Sympathetic Dystrophy Syndrome) and their loved ones.
American RSDHope was officially formed in April of 1995 by Bob Orsini, Lynne Orsini, and Keith Orsini to provide support, information, and education to the hundreds of thousands of CRPS patients across the United States and beyond, as well as their loved ones, friends, caretakers, Medical Professionals, and of course educate the General Public about our disease.
We had actually been meeting as a group for more than a year before that. We were called the Maine RSDS Patient Advocacy Group back then. What a mouthful! Our story began in the chat-rooms and listservs on the IRC of Prodigy, AOL, Netscape (originally Mosaic), and Compuserv late in 1993! Many of you probably don’t even remember two of those companies. Originally we thought we would help the patients and families in our little corner of the country. It soon become apparent that the need was far greater by the contacts we were getting and so also was the need for a new name. In the fall of 1994 we took a leap of faith, wrote our first website, www.RSDHope.org and our world-wide-web journey began with that birth. We have since had millions of visitors to our website.
Keith Orsini has had CRPS since 1974. His CRPS is full body and he has not known a day without pain since. He and his family felt driven to reach out and help his fellow sufferers ever since they came up with the idea to form an organization; and despite the many personal sacrifices the family has made the rewards have been amazing.
Most everyone who was involved with the Organization from its’ inception suffered from some form of Chronic Pain and/or disability. Maybe that is what made everyone so dedicated to helping others. It sure made for some interesting days! We had been involved with CRPS/RSD issues on the internet (or what was becoming the internet back then) since late 1993. Back then it was a spattering of chat rooms and IRC groups. We were a loyal bunch of people who reached out to one another across the phone lines. Yes, they still used phone lines back then, it was called dial-up, that is how long ago it was!Education of Health Professionals and Patients are major tools towards helping patients avoid living a life of pain caused by this disease. Because the lack of information contributes to the hopelessness of an CRPS Patient, our organization is dedicated to filling that gap. We urge you to share any and all information you find on CRPS here and on other Web sites with your treating physician. This information is not meant to replace any that your doctor may have shared with you, but rather to supplement it. We are not medical professionals and we do not offer medical advice. In our many sections we try to provide information for not only the patients and loved ones who visit but also the Doctors, Nurses, Physical Therapists, EMT’s, and other medical professionals who come by to see the latest information. We are constantly updating and upgrading the website in order to provide you with the best information possible to help you fight this disease. In July of 2004 we lost Dad O to cancer. He was a huge loss not just to our family, where he was a most beloved husband, father, and grandfather; but also to the CRPS Community where he was a strong voice for patients and loved ones for a decade. We continue to work in his honor and were blessed with the addition of my sister Karen to the organization who took over many of Dad O’s former responsibilities. Then in January of 2012 Karen was also called home. We know that Karen and dad look down on us and with all of our other friends who have crossed over, help us in those hard times when we aren’t sure we can continue. Then my wife Anjanette stepped in to help keep us going. From then until the end it was my mom Lynne, myself, and Anjanette. It was always a labor of love and we have been blessed to have a lot of love in this amazing family and extended family.
MEDICAL DISCLAIMER
We should also state the following:
A) Who we are not. The American RSDHope Organization is in no way nor do we pretend to be in any way Drs., Nurses, or any other type of Medical Professionals.
B) Who we are. We are patients, family members, friends, and concerned others.
C) What we do. Distribute information on/about CRPS to any and every one who requests it, all across the USA, mainly through our website. If you don‘t own a computer, find one that you can use, through the school system, library, etc. It will change your life! Our material should not be viewed as replacing your own current medical course-of-treatment, but rather should be used in conjunction with your care-givers to help improve your quality of life. UPDATE – AMERICAN RSDHOPE CLOSES ITS’ DOORS – TIME TO REST 😉
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