How to contact us
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 since 1974. You can read more about Keith's story in this section, From Keith Orsini
If you would like to get a copy of the National CRPS Awareness Ribbon (the ribbon on the cover page) for your website, Facebook page, listserve site, etc., send Keith an email
You can contact us at:
American RSDHope
P O Box 875
Harrison, Maine 04040
Email Us
Although we are based in Maine, our scope is in fact, national. CRPS doesn't recognize State Boundries so neither do we.
We started out as a local organization based in Maine but soon grew national in scope. By the end 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.
Some have asked us what our logo's are all about and how we came by them. For our Dragon Logo,we chose a fire breathing dragon because the chief symptom of CRPS/RSDS is an awful nasty burning pain. If you look closely in the fire coming out of the dragon's mouth you will actually see the word "pain". The Knight and Knightess who are fighting the dragon stand for Mom and Dad O., my parents and the founders of this group. If it weren't for them and their example, neither I nor this group would be here today to help you or any of the other millions we have been blessed to help.
Keith came up with the design after going to a Street Art Festival here in Maine. There was an artist who had all sorts of dragons breathing fire and after talking with him we began a 6 month collaboration. Ten drafts later we have the finished product.
Mom and Dad O were presented with the original at one of our Conferences years ago and have it hanging up in their home. A constant reminder that there is hope and that we fight the fight every day.
Our second main logo is "Help Put Out The Flame". This is one we have used since around 1995. Since CRPS/RSDS is mainly burning pain, it made sense to make the logo a fire in the middle of a circle with a line through it and the words above. Our third Logo is "Burning For a Cure". These Logo's can be seen on our CRPS/RSDS Awareness Merchandise in our catalog section of the website.
We have been very blessed and have wonderful volunteers who make this all possible, especially our incredible webmaster Chris Hennessy. Without Chris, aka Norman, who has been with us since we opened the website in January of 1997, 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!
Here is where most of it all happens with Lynne and Karen. They handle the bulk of the work running American RSDHope and if you call us, email us, or write us, chances are you are going to talk to one of them! Without their hard work on a daily basis, and the work of Chris our webmaster, there would be no RSDHope.
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 office! The first picture is where Karen does her thing and the second picture is Lynne doing hers!
Keith, who dabbles on the website, currently lives in Florida.
If you would like to get a copy of the National CRPS Awareness Ribbon (the ribbon on the cover page) for your website, Facebook page, listserve site, etc., send Keith an email
You can contact us at:
American RSDHope
P O Box 875
Harrison, Maine 04040
Email Us
Although we are based in Maine, our scope is in fact, national. CRPS doesn't recognize State Boundries so neither do we.
We started out as a local organization based in Maine but soon grew national in scope. By the end 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.
Some have asked us what our logo's are all about and how we came by them. For our Dragon Logo,we chose a fire breathing dragon because the chief symptom of CRPS/RSDS is an awful nasty burning pain. If you look closely in the fire coming out of the dragon's mouth you will actually see the word "pain". The Knight and Knightess who are fighting the dragon stand for Mom and Dad O., my parents and the founders of this group. If it weren't for them and their example, neither I nor this group would be here today to help you or any of the other millions we have been blessed to help.
Keith came up with the design after going to a Street Art Festival here in Maine. There was an artist who had all sorts of dragons breathing fire and after talking with him we began a 6 month collaboration. Ten drafts later we have the finished product.
Mom and Dad O were presented with the original at one of our Conferences years ago and have it hanging up in their home. A constant reminder that there is hope and that we fight the fight every day.
Our second main logo is "Help Put Out The Flame". This is one we have used since around 1995. Since CRPS/RSDS is mainly burning pain, it made sense to make the logo a fire in the middle of a circle with a line through it and the words above. Our third Logo is "Burning For a Cure". These Logo's can be seen on our CRPS/RSDS Awareness Merchandise in our catalog section of the website.
We have been very blessed and have wonderful volunteers who make this all possible, especially our incredible webmaster Chris Hennessy. Without Chris, aka Norman, who has been with us since we opened the website in January of 1997, 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!
Here is where most of it all happens with Lynne and Karen. They handle the bulk of the work running American RSDHope and if you call us, email us, or write us, chances are you are going to talk to one of them! Without their hard work on a daily basis, and the work of Chris our webmaster, there would be no RSDHope.
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 office! The first picture is where Karen does her thing and the second picture is Lynne doing hers!
Keith, who dabbles on the website, currently lives in Florida.
After discovering my Dr. could give me little more than a name for my condition, I turned elsewhere for information; instead, I found a HUGE hole where information should have been. That is when I started hosting chat rooms on what was then the very beginnings of the internet; along with several other trail-blazing individuals. It was an exciting time.
Now we have some shots of the view looking out the window of the office of the American RSDHope Office. It doesn't get much prettier than Maine! Many months a year it doesn't get much colder either!
Now we have some shots of the view looking out the window of the office of the American RSDHope Office. It doesn't get much prettier than Maine! Many months a year it doesn't get much colder either!
