RSDSA :: organization

About Us > The Organization

Founded

1984

Mission

Our mission is to promote public and professional awareness of CRPS and to educate those afflicted with the syndrome, their families, friends, insurance and healthcare providers on the disabling pain it causes. We encourage individuals with CRPS to offer each other emotional support within affiliate groups. And finally, we are committed to raising funds for research into the cause and cure of CRPS.

Members

>7,000, (731, or 10%, receive free membership)

Research

RSDSA is committed to encouraging research into the cause and cure of CRPS. Since 1992, RSDSA has funded $1,243,371 in fellowships and grants. In 2007, we funded $144,906 in grants, the most ever in a single year.

Some RSDSA-funded research projects include:

Follow-up Study for the Internet-based Epidemiologic Survey
A web-based survey was conducted by the Johns Hopkins School of Medicine between October 2004 and February 2005 to better understand the epidemiology of CRPS. This survey, funded by RSDSA and posted online, resulted in more than 1350 entries. The survey has provided valuable information that has been analyzed in part and presented as a poster abstract at the annual meeting of the American Society of Anesthesiologists in 2005. A follow-up survey questionnaire is being conducted through a website that individuals can directly access to participate in the survey.

2007-2008 Rachel Tobias Young Pain Research Investigator Award
The 2007-2008 Tobias Young Pain Research Investigator Award was awarded to Anne Louise
Oaklander, MD, PhD, and Max Klein, PhD, who will investigate laser Doppler flowmetry for its diagnostic potential. Dr. Klein will work to evaluate the measurement of nerve-mediated blood flow in relation to skin biopsy nerve cell counts through an application of advanced laser Doppler flowmetry techniques in patients whose nerve injuries have been well-characterized through biopsies. A noninvasive technique would help to diagnose CRPS earlier, without invasive skin biopsies and the time-consuming processing of tissue samples.

Maternally-inherited mitochondrial DNA sequence variants and CRPS-I
With American RSDHope, RSDSA awarded a $50,000 research grant to the Children's Hospital of Los Angeles and to Richard Boles, MD, Director, Center for Metabolic and Mitochondrial Disorders at the Children’s Hospital of Los Angeles. Dr. Boles and his team will study maternally-inherited mitochondrial DNA sequence variants and CRPS-I. Their hypothesis is that is that a brain/nerve energy deficiency that can be caused by maternally inherited changes in the mtDNA code plays an important role in the development of many functional disorders, including CRPS-I. The team will study up to 300 individuals who have been diagnosed with CRPS-I by a physician or other healthcare providers.

Pilot Study on Safety and efficacy of the Noninvasive Transcranial Stimulation to Relieve Neuropathic Pain in Patients with CRPS
Previous research has revealed that pain in CRPS patients is associated with cortical reorganization, i.e. pathological changes in the somatotopic organization and excitability of the motor and somatosensory cortex. As studies in patients with CRPS and other symptoms featuring neuropathic pain have shown that reversal of pathological cortical changes back to normal is accompanied by pain relief, modulation of cortical excitability seems to be a promising therapeutic approach to alleviate neuropathic pain. The purpose of the study is to determine the efficacy of a new noninvasive completely painless technique called transcranial direct current stimulation (tDCS), to alleviate pain and sensory abnormalities in patients with CRPS.

Publications

RSDSA Review (Quarterly Newsletter)

In Pain, Out of Work, and Can't Pay the Bills, directory for financially-devastated members

Brochures and other educational materials

Free information packets

Educational Initiatives

Evidenced-based Clinical Practice Guidelines for the Diagnosis, Treatment, and Management of CRPS

Article archive of peer-reviewed medical articles on research, diagnosis and treatment of CRPS

Electronic Alerts

Website

Free information packets

Slide kit for professionals on diagnosis and treatment

RSDSA exhibits at several major medical, health, and benefit insurer conferences

Funding

Contributions, member dues, program fees, special events, and grant support from pharmaceutical and other companies, and private and corporate foundations.

Where Do Your Contributions Go?

Program Services: 93%
Administration and Fundraising: 7%
For more details, please see our annual report.

Goals

Producing a DVD that will instruct physical and occupational therapists how to restore function in people with CRPS. It will be accredited for continuing education credits.

Continue to produce the quarterly RSDSA Review and the website.

Most importantly, we will continue on our mission to educate the community at large about CRPS through our publications, our website, and increased outreach efforts.

Affiliations

RSDSA is proud to be affiliated with the following organizations: