American RSDHope Closed Its’ Doors After Two Decades Of Service 

June 26th, 2016It is with great sadness

that, effective Sunday, June 26th, 2016, American RSDHope announces it closed its doors after more than two decades of serving the CRPS Community. The Orsini family began American RSDHope in 1995 with the hope of raising awareness of this disease and creating a greater understanding of it not only in the medical community but amongst our own families as well.

WHY ARE WE CLOSING DOWN?The answer is very simple. We are just burned out and tired, especially Keith. Twenty one years is a long time especially when you remember that all of us who volunteer at the office battle chronic illness of some kind and Keith in particular has been battling systemic CRPS, fibromyalgia, failed back syndrome, and other issues. We will miss everyone but it is time to pass the torch to the next generation, to allow them, you, to break down a few doors of their/your own.

THANK YOU TO ALL OF OUR VOLUNTEERS!            
We could never have accomplished what we did without the support and participation of so many amazing RSDHope Warriors, Hero’s, and their loved ones. There are far too many of you to name. You know who you are and how much we appreciate your sacrifices on behalf of your fellow patients. These wonderful people have raised money for research, held awareness events, walked the halls of Congress with us, walked the streets for fundraisers, cut hair, collected bottles, passed out brochures, jumped into race cars, pushed their wheelchairs, helped pass legislation and Awareness Month Proclamations, and talked to Senators, Congressional Reps, Governors, and even Presidents. We have talked with them, laughed with them, and sometimes even cried with them on the phone. We were privileged to have met many of them at some of our conferences and they come from every state in the country and every walk of life. We are proud to count them as friends. 

THE CRPS COMMUNITY 
We have seen so many changes in these twenty years in how our disease is dealt with by physicians; how it is diagnosed and treated,  and in 2015 the community saw the advent of the first ever CRPS-specific medication studies by the FDA. We were excited to assist in locating some of the participants for these studies and look forward with great anticipation to their completion. When these types of medications are finally released to the majority of CRPS patients it will cause the greatest positive change our community has ever known in terms of pain reduction and management of the other side effects of the disease.

THANK YOU TO MY FAMILY!
On behalf of my truly amazing parents Mom and Dad O., my courageous sister Karen, and my fearless wife Anjanette who all have volunteered their time and energies to making American RSDHope work on a daily basis, thank you.

To them,

on your behalf, I also say thank you for answering your emails and phone calls even when their own medical issues were sometimes overwhelming. My family members were always the heroes in my eyes. They made my dream of helping others come true and not only saved many lives but also gave patients and their loved ones a safe place to share their questions and fears when they felt no one else was listening.

RSDHOPE’S WEBSITE?
​Over the years American RSDHope has had nearly twenty million visitors to its website, www.rsdhope.org , and even though the organization will be closing we will leave our website up for at least the next five years in the continued hope that people will benefit from the information contained there. Feel free to use the information to help you in your fundraising and/or raising awareness, etc. just remember that you won’t be able to reach us to answer questions.

What if we want to use some of the information on the RSDHope website on my Facebook page or website, maybe on a brochure or t-shirt? Remember, all information on the American RSDHope website remains copyrighted. That copyright will always remain in effect. Having said that, if you have a website or a Facebook page and would like to use some of our information to help explain what the disease is about and/or how it feels you can use some of the information here PROVIDED  you respect the copyright and put at the bottom or beginning of what you copy;
​”Information courtesy of American RSDHope via www.rsdhope.org (or list the exact page where the article or information continues).  Then everyone wins and I appreciate your respecting our copyright. After all, Keith spent a lot of blood, sweat, pain, and tears putting this website together over 20 years. There may also be a book coming and he would be using a lot of the information provided here. 

Thank you to all of you, so many out there, who have respected this work and copyright over the years and have referred hundreds of thousands of people to our website through your pages, websites, newspaper articles, and interviews. You rock and I shall miss you. Well, I am not dying, I will still be around just as not a big of a presence on the net. Taking a rest for a while and taking some time for family, my health, and a little to just enjoy life. I am counting on all of you newbies especially to jump in and take the community to the next level!

QUESTIONS ABOUT CRPS? DRS? PATIENTS? LOVED ONES? SUICIDAL? If you have medical questions, if you need personal assistance or some type of intervention, as a patient, as a loved one, or as a medical professional you will need to visit the RSDSA’s website. IF YOU ARE FEELING SUICIDAL OR KNOW SOMEONE WHO MIGHT BE FEELING THAT WAY PLEASE CONTACT A SUICIDE SPECIALIST IMMEDIATELY, DO NOT DELAY!  We have links right here on the website HERE, and the RSDSA has links on their website HERE but you can also call 911 and ask for help. PLEASE do not delay. 

NATIONAL CRPS AWARENESS RIBBON? 
The copyright and the trademark for the National CRPS Awareness Ribbon, that you see displayed on every page of the website here (the flame colored ribbon) and that has been used by the CRPS community since the year 2000, has now been transferred to the RSDSA from American RSDHope so it will continue on! It is up to you to ensure it is! If anyone would like a copy or would like to use it for fundraising/awareness events please contact the RSDSA, or contact Samantha Barrett.  

RESEARCH FUNDS/AWARENESS EVENTS
​If you had sent RSDHope money or held a fundraiser for our research fund recently rest assured that money is in good hands. American RSDHope sent a check to the RSDSA for the remaining funds in our research account just prior to closure. WHY “PEACE”?Some of you have asked me (Keith) over the years why I always sign my emails with the word “Peace”. Some people just assumed it was because of what the word itself signified. For the curious among you here is the real reason.

From the time I was little, continuing through my adult life, my faith in God has played a huge part in my life and in my ability to manage my chronic illness. In particular, in my faith we have something called the “the passing of the peace”. It refers to John 14:27 when Jesus  is talking with His disciples and tells them,  “I’m leaving you at peace. I’m giving you my own peace. I’m not giving it to you as the world gives. So don’t let your hearts be troubled, and don’t be afraid”. That has carried me through many difficult days and nights over the last four decades and I remind myself of it with each and every email, passing His peace along to others. 

Our time here is brief. Be kind to one another, serve one another, put your egos aside, work together and you will be amazed at the results.  So, from all of us at American RSDHope, now and always, we leave you with peace …
Keith, Lynne, and AnjanetteP.S. Be sure to continue reading below to see the goodbye letters from Lynne Orsini (Mom O). ​                                                                                                                                                                                                                                                                                                                                                                              

GOODBYE TO EVERYONE FROM LYNNE ORSINI – AKA Mom O. 

Dear Friends,  

I would like to thank so many for helping us spread Awareness over the years. We have come a long way in 21 years. We never imagined we would grow so big or reach so many people. 

We started in 1995 as a small Maine group, Keith, Dad O, and myself.  Keith’s sister Karen came on the  board in 2004.  We were then world-wide. It could not have been possible without our Support Groups and Mentors.  I have gotten to know so many of you through emails and phone calls. We thank all of you. However it is time to move on.  It is no longer possible to do it by ourselves. It was not an easy decision. It is the right one though.

Wishing all of you the best,   Lynne Orsini