Fw: [RSD] Re: ADMINISTRATION HRes 420 Finl Update

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This is truely sad, sad news.

[RSD] Re: ADMINISTRATION HRes 420 Finl Update

Hi gang. The following is an e-mail I just received from Orsini inregards to HRes 420. I wish the news were better. wrote:> > Here is the final update on HRes 420. It is dead. It died for two reasons.> > 1) We had plenty of Congressional Representatives SAY they were going to> support it, well over 100, but only 30 went to the trouble to actually sign> on as Co-Sponsors. Once it gets sent to a Committee it needs at least 50> co-sponsors to get it out and onto the floor for a vote. When we saw there> weren't going to be enough co-sponsors we made efforts to have it included> in the Appropriations Bill. That too just failed this week.> > 2) The second reason it failed was that some of those who were going to> co-sponsor or simply support it said they were getting conflicting messages,> emails and calls, from members of the RSD Community. They were being asked> by some not to sponsor the Resolution due to its wording, that HRes 420 did> NOT represent the Community in total, and that a new Resolution would be> introduced later on.> > However, thanks to the efforts of one of our Co-sponsors, Representative> DeLauro from CT., we do have the following wording in the Appropriations> Bill. We hope it will survive into the final draft of the Appropriations> Bill that the Democrats, Republicans, and President Clinton are still> fighting over. It is at least a step forward. Not as big a step as we had> wished for but ANY step forward is a step towards National Awareness.> > "Reflex Sympathetic Dystrophy (RSD) .--RSD is a very painful and disabling> disease that affects an estimated 7 million people in the United States.> Since it is little understood, RSD is often misdiagnosed and therefore not> properly treated.> > The early stages of the disease are the most critical time period because> treatment is highly effective within the early stages. These therapies and> treatments trigger remission in almost 97 percent of the cases treated> properly in this early stage.> > Nearly 75 percent of the 7 million people affected will be forced to suffer> with RSD for their entire lives due to incorrect diagnosis.> > Given the scope and severity of this disease, the Committee is concerned> about the lack of support for research and development for RSD treatment.> Therefore, the Committee urges NINDS to increase funding for further> research into RSD in the hope that early detection can lead to completely> effective treatment. "> > I want to publicly thank every single Group and every single patient and> loved one who worked so hard to get this passed. I know I speak for everyone> who had any part in trying to get it passed, when I say don't think your> efforts were wasted. The above wording is a great step and hopefully we have> laid the groundwork for an Awareness Resolution one day.> > I know not everyone was behind this. Most for the pettiest reason of all,> because our Group and names were mentioned. Even though under it it said;> > "national and community organizations should be recognized and applauded for> their work in promoting awareness about RSD and for providing information> and support to its sufferers;"> > The final Resolution if passed would simply have said "National Awareness> Month", with NO names attached. It would have helped thousands over the next> few years get SSD, WC, Insurance Companies and others to have to admit RSD> IS A REAL DISEASE/DISORDER and they would have had to deal with it> accordingly. Hopefully they would get approved more often and quicker.> Instead many will still have to choose between food and medication.> > I was even told by one of the few but vocal Group Leaders that the reason> one of the more outspoken individuals would not support it because they did> not like the fact that I was friends with someone they did not like. I hope> these people can sleep at night knowing the good they have eliminated,> knowing the people that will be hurt in part due to their actions. How petty> can we be?> > I don't say this to cause another slew of nasty words from those few groups> and individuals to go flying around the listserves. We have had enough of> that. I say this so maybe they will think about the damage that was caused> because of a few little words that would have meant nothing in the long run.> > The RSD Community is not served when we cannot come together on an issue> that benefits EVERYONE as this one would have. We as a community have not> set the example we should have for work to follow, and believe me, we have a> lot of work to come. We have let the younger patients down as well as the> patients who will soon follow in our footsteps.> > There are three main National Breast Cancer Awareness Groups yet they came> together with one voice and now their National Awareness Month has come full> circle and they got an incredible amount of attention this year. They> realized what was most important, helping each other.> > I feel very sad tonight. Sad that we actually failed at such a simple task.> Sad because I have no answers to the questions I get when people ask me why> doesn't everyone recognize RSD? Sad because we have lost more friends this> year, and we still haven't learned the lesson of what is most important. Sad> that people are hung up on personalities and not responsibilities. Sad that> I can't understand how our community will ever grow if the people in it,> don't. Sad that we have let down all those patients and loved ones who> worked so hard to get HRes 420 passed.> > I truly hope no one celebrates this. I hope soon everyone can learn from> this and come together and get a National Awareness Month passed. I> personally could not go through this again.> > Thanks again to all of you who tried to make it happen. Be proud of the work> you did and the reasons you did it.> > Feel free to post this on your listservs, bulletin boards, and Websites but> PLEASE, no more attacks by anyone on either side of this issue. That has to> stop, it doesn't help anyone. I hope this taught us that lesson if nothing> else.> > Peace and freedom from pain, that is all we seek,> > www.rsdhope.org> The National RSDHope Group