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In May, there will be a concert in Michigan to raise money for CRPS/RSD awareness and research.

Mr. James, the songwriter and performer "is trying to put together a slide show movie of people with CRPS/RSD...something that will be very moving and show the really human and very real side of this syndrome ......I need about 60-90 pictures of people with RSDS holding up a standard white poster board from like Staples and then painted (or a big marker)...stating something like "I've lived with RSDS for 10 years" or however long...or "my name is so and so and RSDS affects me everyday" get the can say whatever they want about the disease and how it affects them or how long they've had it or how they feel about it...or ...whatever they like to get across in the picture...I will put them all together with music and narration to make this slide show movie...."

"So I'm requesting ...could you help me track down some of these pictures?...or ask RSDS patients that you know to send them in......Tiffany (my friend with RSDS) has tried through forums and has not been getting a response.....Thanks for your help in advance."

Brian James

U.S. Senator Jeff Bingaman (D-NM) and U.S. Representative Gene Green (D-TX) plan to reintroduce the Ending the Medicare Waiting Period Act of 2005  when Congress returns from recess April 4. They need your help getting original cosponsors for this important legislation.  I urge you to contact your Senators and Representative today asking for their commitment to cosponsor the Ending the Medicare Waiting Period Act of 2005.


S. 2566, "Ending the Medicare Disability Waiting Period Act of 2004"

Senator Jeff Bingaman (D-NM) introduced S. 2566, "Ending the Medicare
Disability Waiting Period Act of 2004," on June 23, 2004.  The bill would,
over 10 years, completely phase-out the two-year waiting period which
Americans with disabilities must endure before receiving Medicare coverage.
The legislation also creates a process by which the Secretary can
immediately waive the waiting period for people with life-threatening


When Medicare was expanded in 1972 to include people who have significant disabilities, lawmakers created a "Medicare waiting period."  Before they can get Medicare coverage, people with disabilities must first receive Social Security Disability Insurance (SSDI) for 24 months.  Generally, SSDI begins five months after an individual's disability has been certified.  As a result, people with disabilities face three consecutive waiting period prior to getting health coverage: (1) a determination of SSDI approval from the Social Security Administration; (2) a five-month waiting period to receive SSDI; and, (3) another 24-month waiting period to get Medicare coverage.

Because of the 24-month Medicare waiting period, an estimated 400,000
Americans with disabilities are uninsured and many more are underinsured at a time in their lives when the need for health coverage is most dire (Dale and Verdier, The Commonwealth Fund, July 2003).  In fact, various studies show that death rates among SSDI recipients are highest during the first two years of enrollment (Mauney, AMA, June 2002).  For example, according to the Commonwealth Fund, 4 percent of these people die during the waiting period.

There is an important exception to the 24-month waiting period and that is for individuals with amyothrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, and for hospice services.  The ALS exception passed the Congress in December 2000 and went into effect July 1, 2001.

"Ending the Medicare Waiting Period Act of 2004" would, over 10 years,
phase-out the waiting period and would also, in the interim, create a
process by which others with life-threatening illnesses, like ALS, could
also get an exception to the waiting period.

As the Medicare Rights Center has said, "By forcing Americans with
disabilities to wait 24 months for Medicare coverage, the current law
effectively sentences these people to inadequate health care, poverty or
death.Since disability can strike anyone, at any point in life, the 24-month waiting period should be of concern to everyone, not just the millions of Americans with disabilities today."

Diane Edquist Dorman
Vice President, Public Policy
Natl. Org. for Rare Disorders
1050 17th Street NW, Suite 600
Washington, DC  20036

If you do not know the name of your Senators or Representative, go to: or

Celgene launches national clinical trial of Lenalidomide for CRPS
Please help us spread the word.
Best of health, Jim Broatch

Multicenter, Double-Blind, Placebo-Controlled Study to Evaluate the Efficacy and Safety of Lenalidomide in the Treatment of Complex Regional Pain Syndrome Type 1

Sponsored by: Celgene Corporation

Information provided by: Celgene Corporation


This is a multicenter, double-blind, placebo-controlled study in adult subjects with Complex Regional Pain Syndrome (CRPS) Type 1.
One hundred eighty (180) subjects diagnosed with unilateral CRPS Type 1 will be enrolled and randomized to receive orally either 10 mg/day of lenalidomide or placebo (90 subjects per treatment arm). For each subject, the study consists of three phases: Pre-randomization Phase (2 weeks), Treatment Phase (12 weeks) and Extension Phase (up to 52 weeks).

Condition Treatment or Intervention Phase
Complex Regional Pain Syndrome (RSD) Type 1 Drug: Lenalidomide Phase II

MedlinePlus related topics: Reflex Sympathetic Dystrophy

Study Type Interventional
Study Design Multicenter, Randomized, Double-Blind, Placebo-Controlled, Single Group Assignment, Safety/Efficacy Study.

Further Study Details

Expected Total Enrollment 180
Study start January, 2005
Study completion January, 2007


Ages Eligible for Study 18 years and above
Genders Eligible for Study Both


Inclusion Criteria

Age 18 years at the time of signing the informed consent form
Understand and voluntarily sign an informed consent form
A diagnosis of CRPS Type 1 as defined by modified International Association for the Study of Pain criteria for at least one-year duration. Unilateral involvement of a distal limb (hand or foot) with or without proximal spread must be present. In the presence of upper and lower limb involvement, the most severely affected limb will be designated the CRPS-affected limb.
Screening (Visit 1): CRPS pain intensity score in the CRPS-affected limb
must be at least 4 on an 11-point (0-10) PI-NRS
Randomization (Visit 2): Average PI-NRS score for randomization
purposes (Visit 2) will be based on AM and PM assessments made during the 7 days prior to randomization:
At least eight PI-NRS scores during this 7-day period are
required and
Average PI-NRS score in the CRPS-affected limb during this
period must be at least 4 on an 11-point (0-10) PI-NRS.
Measurable (by electrophysiology methods) sural, median sensory,
median motor and peroneal motor nerves at the screening nerve
conduction study.
Opioid analgesics, non-opioid analgesics, non-steroidal anti-inflammatory drugs, anticonvulsants, antidepressant drugs and other non-drug therapies may be continued provided that the subject is on stable doses/regimens for at least four weeks prior to the start of the Treatment Phase (Visit 2).
Able to adhere to the study visit schedule and other protocol
Women of childbearing potential (WCBP) must have a negative serum or urine pregnancy test within 7 days of starting study drug. In addition, sexually active WCBP must agree to use adequate contraceptive methods (tubal ligation; intra-uterine device; barrier contraceptive with spermicide; or vasectomized partner) while on study drug. The use of steroid-based contraceptives (oral, injectable or implanted) is not permitted in this study. WCBP must agree to have pregnancy tests every 4 weeks while on study drug.
A woman of child-bearing potential is a sexually mature woman who has not undergone a hysterectomy or who has not been naturally postmenopausal for at least 24 consecutive months (i.e., who has had menses at any time in the preceding 24 consecutive months).
Exclusion Criteria

The presence of any of the following will exclude a subject from study enrollment:

History of deep vein thrombosis (DVT) or stroke in the past 5 years.
Documented peripheral neuropathies to include diabetic neuropathy
and other metabolic or toxic neuropathies.
Current signs or symptoms of severe, progressive or uncontrolled renal,
hepatic, hematological, endocrine, pulmonary, cardiac, neurological or
cerebral disease.
Any other serious medical condition, laboratory abnormality, or
psychiatric illness that would prevent the subject from signing the
informed consent form.
White blood cell count (WBC) < 3.5 x 109 / L at Visit 1.
Bilirubin, alanine transaminase (ALT), aspartate transaminase (AST) or
alkaline phosphatase levels more than two times the upper limit of the
normal range at Visit 1.
Abnormal thyroid function test values at Visit 1.
Any condition, including the presence of laboratory abnormalities,
which places the subject at unacceptable risk if he/she were to participate in the study or confounds the ability to interpret data from the study.
Use of concomitant medication(s), including steroid-based
contraceptives (oral, injectable or implanted) and hormone replacement
therapies which could increase the risk for developing DVT.
Concurrent use of thalidomide.
Prior development of an allergic reaction/hypersensitivity while taking
Prior development of a moderate or severe rash or any desquamation
while taking thalidomide.
Prior treatment with lenalidomide.
Location Information (United States)

Arizona Pivotal Research Centers, Peoria, Arizona 85381
California Loma Linda Institution, Loma Linda, California, 92354
  UCSD Center for Pain and Palliative Medicine, La Jolla, California, 92093,
Florida Space Coast Neurology, Palm Bay, Florida 32905
Illinois Rehab Institute of Chicago, Chicago, Illinois, 60611
Iowa University of Iowa, Iowa City, Iowa, 52242
Maryland Johns Hopkins Hospital, Baltimore, Maryland 21287
Massachusetts Baystate Medical Center, Springfield, Massachusetts, 01199,
  Beth Israel Deaconess Medical Center, Boston, Massachusetts, 02115

 Mayo Clinic, Rochester, Minnesota 55905
Missouri Washington University Pain Management Center, St. Louis, Missouri 63141
New York Hospital for Joint Disease, New York, New York, 10003
North Carolina Carolinas Pain Institute, P.A. & The Center for Clinical Research, LLC,
Winston-Salem, North Carolina, 27108
  Duke University Medical Center, Durham, North Carolina, 27705
  UNC Hospitals University of North Carolina, Chapel Hill, North Carolina, 27599
  Womack Army Medical Center, Fort Bragg, North Carolina 28310
Oregon Oregon Health & Science University, Portland, Oregon, 97239
Pennsylvania Drexel University College of Medicine, Philadelphia, Pennsylvania, 19102
  Knobler Institute of Neurologic Disease, Ft. Washington, Pennsylvania, 19034
Texas Texas Tech Medical Center, Lubbock, Texas, 79430
Virginia University of Virginia Pain Management Center, Charlottesville, Virginia,
Washington Swedish Pain Services, Seattle, Washington, 98104


More Information

Study ID Number: CC-5013-CRPS-002
Record last reviewed:
Last Updated:
Record first received: Identifier:
Health Authority: United States: Food and Drug Administration.


Dear All Those Impacted by RSD (People with RSD, their family, friends, community, town leaders, etc.)

We at For Grace are urgently asking all to write letters, e-mails, and make phone calls to the California State legislators listed below to support AB 1648, the California RSD Education bill. This bill is about to go before (2-3 weeks) their Assembly Health committee for a hearing and vote-- and we desperately need your voice to enable its passage. It has been brought to our attention it is imperative that these legislators here from the RSD community-- or this bill stands a good chance of dying. Please don't allow this to happen--PLEASE TAKE ACTION NOW.

The California RSD Education bill (bill text provided below) was introduced on the Capitol floor, February 22nd, by Assemblywoman Fran Pavley. This bill, if passed, will fund an RSD awareness campaign through the state's Department of Health Services, targeting education to healthcare professionals and the general public. Once implemented, this RSD education campaign will provide crucial information to enable earlier recognition of the disease, better, faster medical interventions-- and ultimately, save many lives from the terrible ravages of unchecked, unmanaged RSD.

You don't have to be a California resident to act. ALL RSD voices from ALL over the country can send a clear, firm and absolute message to these legislators that this bill is necessary for a better tomorrow for those impacted by RSD. If this bill passes in California, it will help pave the way for similar bills throughout the country!

****Suggested Action******

Please call, write or e-mail the CA legislators below, stating your support of AB 1648 and urging a "YES" vote for its passage in their Assembly Health committee. We have provided a letter sample (written by RSD'er Toni Amarel of Folsom, CA) as a guide. Also, if possible, please cc: all correspondence to our legislative liaison, Tamara Odisho (her contact information is listed below), so we can keep a record of the response.

Co-sponsors for AB 1648 lined up to date are the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), the American Chronic Pain Association (ACPA), the American Pain Foundation (APF), the Southern California Cancer Pain Initiative (SCCPI) and the Inter-Cultural Cancer Caucus (ICCC).

Please take action now-- and please share this message with everyone you know who can support you in this effort. The more voices heard-- THE BETTER...

THANK YOU all for helping us realizing "the dream of never again",

Cynthia Toussaint

Founder/Spokesperson, For Grace

John Garrett

President, For Grace

Who to send letters of support to (via e-mail, fax or phone)....

These are the 13 State Assembly Health Committee Members which need to be contacted now. Sending letters, e-mails and/or calls directed to their District Office as well as their Capitol Office is a good idea.

(D) Wilma Chan - Chair of the Health Committee

Sacramento Office:

P.O. Box 942849
Sacramento, CA 94249-0016
Ph: (916) 319-2016/ Fax: (916) 319-2116

District Office:

1515 Clay Street
Suite 2204
Oakland, CA 94612
Ph: (510) 286-1670/ Fax: (510) 286-1888

(D) Patty Berg

Sacramento Office:

State Capitol

PO Box 942849

Sacramento, CA 94249-0001

Ph: (916) 319-2001/Fax: (916) 319-2101

District Office:

50 "D" Street, Suite 450

Santa Rosa, CA 95404

Ph: (707) 576-2526/Fax: (707) 576-2297

(D) Rebecca Cohn

Capitol Office
State Capitol
P.O. Box 942849
Sacramento, CA 94249-0024
Ph: (916) 319-2024/ Fax: (916) 319-2124

District Office
100 Paseo De San Antonio, Suite 319
San Jose, CA 95113
Ph: (408) 282-8920/ Fax: (408) 282-8927

(D) Mervyn Dymally

Capitol Office

State Capitol

PO Box 942849

Sacramento, CA 94249-0052

Ph: (916) 319-2052

District Office

322 W. Compton Boulevard

Suite 100

Compton, CA 90220

Ph: (310) 223-1201

(D) Dario Frommer


P.O. Box 942849
Sacramento, CA 94249-0043
Phone: (916) 319-2043
Fax: (916) 319-2143


620 N. Brand Boulevard, Suite 403
Glendale, CA 91203
Phone: (818) 240-6330
Fax: (818) 240-4632

(D) Mike Gordon

State Capitol
P.O. Box 942849
Sacramento, CA 94249-0053
(916) 319-2053
(916) 319-2153 fax

1700 East Walnut Avenue
Suite 601
El Segundo, CA 90245
(310) 615-3515
(310) 615-3520 fax

(D) Dave Jones

State Capitol
P.O. Box 942849
Sacramento, CA 94249-0009
(916) 319-2009
(916) 319-2109 fax

915 "L" Street, Suite 110
Sacramento, CA 95814
(916) 324-4676
(916) 327-3338 fax

(D) Cindy Montanez

District Office

11541 Laurel Canyon Boulevard, Ste. C

Mission Hills, CA 91345

Ph: (818) 838-3939/Fax: (818) 838-3931

Sacramento Office:

State Capitol, Room 3013

Sacramento, CA 95814

Ph: (916) 319-2039/Fax: (916) 319-2139

(D) Gloria Negrete McLeod

District Office
4959 Palo Verde Street, Suite 100B
Montclair, CA 91763
Phone: (909) 621-2783
Fax: (909) 621-7483

Capitol Office
State Capitol
P.O. Box 942849
Sacramento, CA 94249-0061
Phone: (916)319-2061
Fax: (916) 319-2161

(R) Greg Aghazarian - Vice Chair of the Health Committee

Capitol Office
State Capitol
Room 4167
Sacramento, CA 95814
Phone: (916) 319-2026
Fax: (916) 319-2126

Stockton District Office
4557 Quail Lakes Dr.,
Suite C-3
Stockton, CA 95207
Phone: 209-473-6972
Fax: 209-473-6977

(R) Alan Nakanishi

Capitol Office
State Capitol, Room 5175
P.O. Box 942849
Sacramento, CA 94249-0010
Phone: (916) 319-2010
Fax: (916) 319-2110

Lodi District Office
218 W. Pine Street
Lodi, CA 95241
Phone: (209) 333-5330
Fax: (209) 333-5333

(R) Keith Richmond, Dr.

Capitol Office
State Capitol Room 5128
Sacramento, CA 94249-0038
Phone: 916-319-2038
Fax: 916-319-2138

Granada Hills District Office
10727 White Oak Ave.
Suite #124
Granada Hills, CA 91344
Phone: (818) 368-3838
Fax: (818) 885-3307

(R) Audra Strickland

Capitol Office
State Capitol
Room 4208
Sacramento, CA 94249-0037
Phone: (916) 319-2037
Fax: (916) 319-2137

Westlake District Office
2659 Townsgate Road,
Westlake Village, CA 91361
Phone: 805-230-9167
Phone: 805-230-9183

Please CC: letters and e-mails of support to:

Tamara Odisho

e-mails address:

Legislative Aide
Office of Assemblymember Fran Pavley
Forty-first Assembly District
916.319.2978 direct
916.319.2141 fax

Sample Letter (drafted by RSD'er Toni Amarel of Folsom, CA, ):


Assemblyperson (insert name of legislator you're sending letter to)


City, State, Zip

Dear Assemblymember (insert here last name of legislator);

On February 22nd, the Reflex Sympathetic Dystrophy (RSD) Education Bill (AB 1648) was introduced. Please vote "Yes" on this very important health bill for our golden state when it comes up for a vote before your health committee.

An estimated 1.5 to 6 million Americans suffer from the devastating effects RSD. Yet, RSD remains virtually unheard of. What is RSD? RSD is a progressive neurological disease with constant chronic pain as its main symptom. Furthermore, it is a debilitating disease that if left untreated can spread to all parts of the body leaving the patient completely disabled. If diagnosed early and with appropriate medical care, it can be successfully treated. However, most patients have extreme difficulty getting a timely diagnosis. Why? Because, the medical community as a whole is not educated about what causes RSD or how to diagnosis and successfully treat it.

Anyone, young or old can get RSD. (Here, please insert a brief discription of your RSD experience-- 3 to 4 sentences at the most) (Here's what Toni wrote...) I have personally suffered with RSD since 1998 and this disease has wreaked havoc on my life. My family and I have suffered from extreme financial hardships due to mounting medical costs, prolonged family disruption, social isolation, diminished quality of life, depression and anxiety. The sad reality is that if I had received early diagnosis and appropriate treatment I could have been cured. Instead, I will endure of lifetime sentence with RSD.

Education is the key to successful diagnosis and treatment of RSD. No one should have to suffer a lifetime of excruciating pain from RSD. RSD can be successfully treated and at times put into remission. We must educate our medical community and our population about RSD so as to prevent RSD from claiming the life of another person. We must act now to pass the RSD Education Bill.

I urge you, as stewards of our golden state, to vote yes on the RSD Education Bill. Your yes vote will be the first step in educating our medical community and California's population about RSD.


(Your Name)

(City, State)

(How long you've had RSD, i.e., RSD since 1998)

Text of California RSD Education Bill:


INTRODUCED BY Assembly Member Pavley
(Principal coauthors: Senators Escutia and Soto)
(Coauthors: Assembly Members Dymally, Goldberg, Hancock, Oropeza,
Wolk, Senators Figueroa and Kuehl)

FEBRUARY 22, 2005

An act to add Chapter 5.5 (commencing with Section 104307) to Part
1 of Division 103 of the Health and Safety Code, relating to health,
and making an appropriation therefor.


AB 1648, as introduced, Pavley. Reflex sympathetic dystrophy.
Under existing law the State Department of Health Services
conducts a program for the control of high blood pressure and
maintains a program for the prevention of blindness.
This bill would require the department to establish and implement
the Reflex Sympathetic Dystrophy Education and Research Program.
This bill would establish the continuously appropriated Reflex
Sympathetic Dystrophy Fund for the purposes of this bill.
Vote: majority. Appropriation: yes. Fiscal committee: yes.
State-mandated local program: no.


SECTION 1. This act shall be known and may be cited as the Reflex
Sympathetic Dystrophy Education and Research Program Act.
SEC. 2. The Legislature finds and declares the following:(a)
Reflex sympathetic dystrophy (RSD), also know as complex regional
pain, is a debilitating and progressively chronic condition
characterized by severe burning pain, pathological changes in bone
and skin, excessive sweating, tissue swelling, and extreme
sensitivit! y to touch.
(b) More specifically, RSD is thought to be a nerve disorder that
generally occurs at the site of a minor or major trauma injury, but
may also occur without an apparent injury to the afflicted person.
(c) While the causes of RSD are unknown, it is thought to be the
result of damaged nerves of the sympathetic nervous system.
(d) The disorder is unique in that it simultaneously affects the
nerves, skin, muscles, blood vessels, and bones, and if untreated,
can result in permanent deformity and chronic pain.
(e) RSD is often misdiagnosed because this condition is either
unknown or is poorly understood; the prognosis for patients suffering
from RSD is generally much better when the condition is identified
and treated as early as possible, ideally within three months of
identifying the first symptoms.
(f) If treatment is delayed, the disorder can quickly spread to
! the entire limb, and changes in bone and muscle may become
irreversible, resulting in limited mobility, atrophy of the muscles,
and eventual permanent disability of patients.
(g) Since a delay in diagnosis or treatment for this debilitative
condition can result in severe physical and physiological problems,
and early recognition and prompt treatment of RSD provides the
greatest opportunity for recovery, it is in the best interest of the
public to establish a program to educate both individuals and medical
professionals regarding this debilitative condition and to promote
research to accurately identify, diagnose, and treat RSD.
SEC. 3. Chapter 5.5 (commencing with Section 104307) is added to
Part 1 of Division 103 of the Health and Safety Code , to read:

104307. (a) The department s! hall establish a Reflex Sympathetic
Dystrophy Education and Research Program. (b) For purposes of this
chapter, "RSD" means reflex sympathetic dystrophy. Reflex sympathetic
dystrophy is a debilitating and progressively chronic condition
characterized by severe burning pain, pathological changes in bone
and skin, excessive sweating, tissue sweating, tissue swelling, and
extreme sensitivity to touch.
(c) The purpose of the program established under this chapter
shall be to promote public awareness of the causes of RSD, the value
of early detection and diagnosis and possible treatments, and to
promote research, through public and private resources, to accurately
identify, diagnose, and treat reflex sympathetic dystrophy.
104308. In implementing the program established under this
chapter, the department shall do all of the following: (a) Establish
a public education and outreach campaign, through written materials,
brochures, and the department's Web site, to promote RSD education,
that will enable individuals to make informed decisions about their
health, including, but not limited to, the following elements:
(1) The cause and nature of RSD.
(2) The risk factors that contribute to the manifestation of RSD.

(3) Available treatment options, including risks and benefits of
those options.
(4) Environmental safety and injury prevention.
(5) Rest and use of appropriate body mechanics.
(6) The availability of RSD diagnostic, treatment, and outreach
services in the community.
(7) Any other factors or elements that might mitigate the effects
of RSD.
(b) Develop educational materials and brochures and make them
available to consumers.
(c) Coordinate, promote, and offer professional education
programs, ! through institutions of higher education, for health care
providers and health-related community-based organizations,
including, but not limited to, the following:
(1) Research findings.
(2) The cause and nature of RSD.
(3) RSD risk factors, including, but not limited to, lifestyle,
heredity, and drug interactions.
(4) The diagnostic procedures and appropriate indications for
their use.
(5) Medical and surgical treatment options, including experimental
and established drug therapies, and the risks and benefits of each
(6) Environmental safety and injury prevention.
(7) The availability of RSD diagnosis and treatment and support
services in the community.
(d) Promote research, through both private and public funding
sources, to accurately identify, diagnose, and treat RSD.
104309. (a) The Reflex Sy! mpathetic Dystrophy Fund is hereby
established in the State Treasury. Notwithstanding Section 13340 of
the Government Code, all moneys in the fund are hereby continuously
appropriated to the department, without regard to fiscal years, for
the purpose of funding this chapter.(b) The department may seek and
accept grants, awards, and other funds not derived from the General
Fund for the implementation of this chapter, and shall deposit any
moneys received pursuant to this section into the fund for
expenditure for the purposes of this chapter.
104309.5. This chapter shall be implemented only to the extent
funds from federal or private sources are made available for this

For Grace (
An organization dedicated to raising awareness of
Reflex Sympathetic Dystrophy

PO Box 1724
Studio City, California 91614

Copyright 2005