AMERICAN RSDHope GROUP

aka RSDHope   |   Harrison, ME   |  http://www.RSDHope.org
This organization has not appeared on the IRS Business Master File in a number of months. It may have merged with another organization or ceased operations.
This organization's exempt status was automatically revoked by the IRS for failure to file a Form 990, 990-EZ, 990-N, or 990-PF for 3 consecutive years. Further investigation and due diligence are warranted.

Mission

When Keith Orsini was diagnosed with Reflex Sympathetic Dystrophy Syndrome (RSDS) in April of 1993, we discovered that his Doctor could give little more than a name for his condition. We searched everywhere but found a HUGE hole where information should have been. As we searched more, we then compiled such a huge wealth of information that it compelled us to find a way to share this information with patients and the Health Professionals charged with their care. Early proper diagnosis and treatment would help these patients to avoid a lifetime of pain caused by this progressive disease of the Autonomic Nervous System. Originally incorporated in 1995, we received our 501(C)(3) status and known as of 2008 as AMERICAN RSDHope. Our purpose is to make information available, on a National level to patients, their families,loved ones and Health Care Professionals. Our internet presence is www.RSDHope.org

Ruling year info

1996

Principal Officer

Mrs. Lynne (Marilyn) Orsini

Main address

33 Stonehedge Wy P O Box 875

Harrison, ME 04040

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EIN

01-0502619

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

Graduate, Professional(Separate Entities) (B50)

Graduate, Professional(Separate Entities) (B50)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Our name, AMERICAN RSDHope, reflects the broad reach of our services.

Our Internet presence, www.RSDHope.org,as of August, 2008, reached over 9,628,000 visitors from the United States and around the world.

Besides having a very large amount of medical information on the disease itself, the web site provides Medical Articles, Articles on Coping with Pain, and on Living with RSDS with help for the entire family. The site offers specific support to all age groups from pre-teens to retired folks.

In partnership with the internet programs and information, we have a postal mailing list, used to reach thousands of RSDS patients without internet access.

The American RSDHope National Conferences draw Nationwide attendance and are geared to RSDS Patients, Families and Health Professionals.

All of our patient programs target the entire family, because Chronic Pain diseases affect not only the patient, but also those around him/her.

The Hope is to increase awareness throughout the entire spectrum from the general public to healthcare professionals.

In addition, we offer a number of products designed to generate awareness for Reflex Sympathetic Dystrophy.

Finally, we have established the Hope For Tomorrow Research Fund.

This Research Fund is a significant effort that is unique in that NO administrative costs are charged to this fund.

Every dollar donated to this fund WILL ONLY BE USED FOR RSDS RESEARCH.

Population(s) Served

Where we work

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Financials

AMERICAN RSDHope GROUP

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Operations

The people, governance practices, and partners that make the organization tick.

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AMERICAN RSDHope GROUP

Board of directors
as of 08/14/2008
SOURCE: Self-reported by organization

Karen Toner

James Toner

Ronald Sheriffs

Lynn Sheriffs

Heidi Orsini

Keith Orsini

Lynne Orsini

Kevin Orsini