Some History - American RSDHope

I would like to share with you some information on how our Organization got started and why. I was officially diagnosed with CRPS/RSDS in April of 1993, over eight years after the car accident which broke my back, which was apparently when it started going full body (typical for most full body or systemic CRPS/RSDS patients is a spinal injury). At that time, we thought that was the beginning of this disease for me. Little did we know it had actually been my undiagnosed pain which originated in 1974. You can read more about Keith’s story in this section, From Keith Orsini

Although we started in based in Maine, our scope is in fact, national. CRPS doesn’t recognize State Boundaries so neither do we.

We started out as a local organization based in Maine but soon grew national in scope. By the middle of 2010 our website had surpassed 13 million visitors and we felt we needed to give it a major overhaul. We basically re-built the website from the ground up. A much bigger project than we anticipated and we appreciate everyone’s patience. By early 2016 we had crossed the 19 million mark.

LOGOS

The National CRPS Awareness Ribbon is one that is available to all CRPS groups. It is available to any CRPS Support group, individual, fundraiser, etc. looking to raise awareness, research funds, etc.

We have been very blessed and have wonderful volunteers who make this all possible, especially our incredible webmaster Chris Hennessy. Without Chris who has been with us since we opened the website we would never have achieved helping a tenth the number of people we have been able to. He is an amazing guy and we owe him a debt we can never repay.

Here you can see part of our vast offices at American RSDHope, hee hee. Seriously, the whole thing is not much bigger than this in reality. Most of the rest of it is storage for the awareness items. The second picture is Lynne at her desk working away!

And you must realize that this is truly a labor of love. Everyone who works on American RSDHope is dealing with a chronic illness, at least one, and is a member of the Orsini family in some way including all of our Board members. No one is paid for their work, it is all done because they care, they want to make a difference in the lives of patients and loved ones of CRPS patients. YOU!

For now, check out our original offices up in Maine! The first picture is where Karen did her thing (before we lost her in 2012), and the second picture is Lynne, or as she is known to most in the CRPS Community, Mom O., doing hers, and a great picture of our beloved Dad O (we lost Dad in July of 2004) who is standing near Glen Canyon Dam in Page AZ just a few days before I received my first Low Dose Ketamine Treatment back in 2003 from Dr Ronald Harbut, the Father of Ketamine in the United States. I was the 6th person in the USA to receive this treatment and went into a 3.5 year remission from it.

Page, AZ. is where the very first Ketamine treatments were begun here in the United States and of course Doctor Ronald Harbut is know as the “Father of Ketamine” in the USA for helping to develop the ketamine treatment for CRPS patients. He developed it through his work with Dr Correll in Australia and then brought that treatment to this country; eventually teaching other Doctors, like Dr Schwartzman in PA, how to perform it.

Now we have some shots of the view looking out the window of the office of the the basement of my parents home, where we started American RSDHope, as well as one from the front of the house. It doesn’t get much prettier than Maine! Many months a year it doesn’t get much colder or snowier either!