STANDING UNITED FOR RSD

WELCOME! We hope you are here to aid us in our effort to raise Awareness of RSD on a National level. We are using this page as a way to continuously update everyone in the RSD Community on the efforts to raise Awareness of RSD across the United States. We call this new effort, Standing United for RSD!

  1. NATIONAL AWARENESS MONTH CAMPAIGN
  2. STANDING UNITED FOR RSD
  3. WASHINGTON D.C. PROJECT
  4. WE NEED YOUR HELP
  5. NEW RSDS PETITION
  6. RSDSA OF NJ’s ENDORSEMENT

NATIONAL AWARENESS MONTH CAMPAIGN

Last year the RSDHope Group started the National Senate Awareness Campaign to get a National Resolution for the Awareness of RSD in the month of October. Thanks to a lot of hard work by members of the National RSD Awareness Month Team, and ALL of you who wrote in to your Political Representatives, signed petitions, sent emails and made calls, it appears we have the goal in sight! We fully expect to have October recognized as National RSD Awareness Month sometime in early September.

Special thanks go to Congressman Duke Cunningham for writing the Resolution. He will also be the one reading it into the Congressional Record. Alfie Burns from the RSDSA of California has worked extensively with Duke and he has been a big supporter of RSD issues.

We feel that having the disease recognized Nationally by the Congress will not only heighten awareness, but also enable patients to have greater success in getting their RSDS claims to SSDisability, Workman’s Compensation, and other insurance claims more quickly and successfully recognized. The RSDSA of NJ is now working on the problem of finding ways to facilitate that particular process.

I want to thank the Director of the Awareness Month project, Kathy Wegman, as well as all those who did major work; Alfie Burns, Gary and Linda Calhoun, Betsy Herman, Catherine Rice, Jessi-anne Rosenbaum, and Sally Johnson, the SCRSDSA, and all the groups and individuals across the country who wrote in or posted about our effort. This was a truly nationwide effort.

When you write in to Congress , please also mention HR 2260 , it is a Bill in Committee that will enable chronic pain patients to be able to have their doctor’s prescribe an adequate amount of medication for people to get out of pain.

STANDING UNITED FOR RSD

I know some of you were confused by a second Campaign to make April Awareness Month. After a series of meetings with Joe and Dawn McCue, we decided what was best for RSD patients and their loved ones was “Standing United for RSD”, coordinating our efforts, and putting our small differences aside. They agreed to support our October Resolution, we agreed to support their efforts in DC, and together we agreed to do all we could to help bring all groups together in a united effort for what could be a substantial series of events for RSD.

WASHINGTON D.C. PROJECT

This was done for the next Awareness project especially. Some of you know Joe as the man who walked from Philly to DC to raise Awareness for RSD. His efforts paid off big time. We have been assigned a liaison in Washington, DC to work with us regarding RSD issues, how to present our needs to Congress, as well as answer any questions we may have. His name is Thomas Bullock.

Even more importantly, on the 27th of July, a group of us are going to the White House. We will be meeting with Wilson H. Hulley, from the Executive Staff of the President’s Committee on “Employment of People with Disabilities”. He is a great guy and just so happens to have RSD himselfThis Committee is a BIG deal. It has a lot of say on issues dealing with disability in this country.

Our first meeting will basically be an orientation for us. We will decide on the key issues we want to tackle first and how the Committee can help us accomplish them. This meeting is just the first in a long series of meetings. Families and other patients will be going to the follow up meetings in the coming months.

Issues that we are going to be focusing on;

A) Awareness
B) Social Security issues
C) Workers Comp
D) Research – What they are doing now and what can be done
E) Funding – Proposed grant (Possibility of a proposal coming before Congress for $100 Million for RSD Research!)

Groups that are going to this first meeting will be RSDHope, RSDSA of New Jersey, BeatingRSD, and Pain Pals Support Group.

Others who will be attending include; Steven Shisler, Esq., Dr. Paul Schneidman, Dr. Sol Kadish, Karen Rabideau, and a Scientist, supplied by RSDSA.

Congressman Joseph Hoffel is also going to meet with us and is willing to help us with many issues. He has taken an interest in this plight and is eager to lend a hand. He has also promised us several meetings. After our initial meeting at the White House on July 27th, we will be going over to a meeting with a Congressional Committee.

Joe wanted to thank Oscar (Bo) Buress, Jack and Lil, and Amy Wild for all their help.

This is only the beginning everyone. We are on our way!

WE NEED YOUR HELP

We are now coordinating this effort with Groups all over the country in a TEAM effort. Now is the time we have all been waiting for. The slogan we chose for this Awareness Effort

Is “Standing United for RSD”.

We want to make it clear to EVERYONE that this is an effort to unite all the Groups and individuals out there in an Awareness Campaign. Getting our own month was the first step. Going to DC was the second. Our meeting in DC will be the third. YOU will be the fourth.

We need each and every one of you, your loved ones and friends, to write to your Congressional and Senatorial Representatives. Let them know why it is vital that this disease be recognized, why it is vital for people to develop an awareness of it, why we need funding for research, and what it has done to your lives! Let them know in real, personal terms how it has affected you. We each have a vote In November. Let them know that we, the voters, are asking them to do this extremely important work. We represent millions of patients and loved ones, millions of votes!

I realize we each only have so much spare time when we are physically able to write and we want to use our energy wisely. Think what would be the most effective use of your time and efforts among the choices out there. We have a chance to make a big impact here.

This won’t be easy and it won’t be quick but we need to do this for those who follow behind us. One day we all hope and pray there will be no need for such legislation but until then we have to put forth the extra effort, every effort, to raise awareness NOW, we cannot wait.

We have Groups all across the country from Maine to California working together on this. It is the only way to make it happen. If you are in or if you run a Support group, online or locally, please get your group involved. If you have a newsletter, please place this information in it; copy it if you like. This is too important to put on the back burner. The time is now and the person is you! Please help all patients everywhere.

If you are on-line, you can go to http://www.congress.org for information on contacting your Congressional Representatives. If you are not on the computer, simply look in your phone book and/or contact your local Town Office. Please spread the word and help us get increased awareness across the country as well as get increased funds for Research!

Please also send a copy of the letter(s) to Joe and Dawn McCue ( [email protected] )

NEW RSDS PETITION

BEATINGRSD INTERNATIONAL
PETITION FOR NATIONAL
REFLEX SYMPATHETIC DYSTROPHY SYNDROME
AWARENESS AND RESEARCH

STANDING UNITED FOR RSD

I, the undersigned, being 18 years of age and older, feel that there is a
need for education, research and public awareness of the debilitating
disease, Reflex Sympathetic Dystrophy Syndrome. It is our wish and we
respectfully request the assistance of the United States Congress and the
Office of the President to accomplish this task.

This is the Petition. We ask that you and all your family and friends sign this Petition. The more signatures we present, the more impact we will have. Remember one thing when dealing with our elected officials, there are SIX MILLION RSD PATIENTS and then add in their Families and Friends. How many VOTES do you think we have?

To sign this Petition go to http://members.home.net/mcirish/petition.html

Lets help make the year 2000 the year that RSDS was recognized across the board. If we all work together we can make it happen. It is a slow process, but brick by brick we lay the foundation that one day will lead to building a National Commitment to RSD Research and Awareness.

Sincerely, with peace, and warm healing thoughts,

STANDING UNITED FOR RSDS

If you have questions, or comments, please contact

BEATINGRSD INTERNATIONAL

Joe and Dawn McCue

[email protected]

http://members.home.net/mcirish/petition.html

or

RSDHope Group at
www.rsdhope.org or [email protected]

PO Box 875

Harrison, ME 04040

RSDSA OF NJ ENDORSEMENT

June 18, 1999

To: Keith Orsini, executive director

From: Paul Charlesworth, president

Subject: Endorsement of RSDHope’s National Awareness Campaign

The RSDSA Board of Directors enthusiastically agrees to support RSDHope’s National Senate Awareness Campaign. We endorse your Campaign’s goals: to promote greater awareness of this under-recognized syndrome, and to make it easier for individuals disabled by RSDS’ symptoms to successfully obtain compensation. RSDSA is committed to supporting all activities that will benefit the RSDS community and all individuals afflicted by chronic pain.

We will gladly assist you to promote the Campaign. Looking forward to working with you.

Paul Charlesworth, President RSDSA