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Author Topic: RSDHope.org  (Read 28983 times)
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PhoenixRising
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    Last Login:October 14, 2014, 08:42:39 AM
    RSD Status: Patient
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    « on: August 18, 2008, 02:25:04 PM »

    Quote
    Who is American RSDHope? What do we stand for? How did we get started?

    As a rule Mission statements are from one sentence to three sentences long. American RSDHope's Mission Statment is as follows;


    American RSDHope - Provide Hope, Help, information, and Comfort to patients with Reflex Sympathetic Dystrophy (RSD/CRPS) and their loved ones.


    We also have a more in-depth statement that tells a fuller, more complete tale of who and what we are as to our Research fund and our general organization which we thought we should share here.


    American RSDHope was formed in April of 1995 by Bob Orsini, Lynne Orsini, and Keith Orsini to provide support, information, and education to the millions of RSD/CRPS patients across the United States and beyond, as well as their loved ones, friends, caretakers, Medical Professionals, and of course educate the General Public about our disease.

    Keith Orsini has had RSD since 1974. His RSD is full body and he has not known a day without pain since. He and his family have felt driven to reach out and help his fellow sufferers ever since they came up with the idea to form a group, despite the many personal sacrifices the family has made. Most everyone involved with the Organization suffers from some form of Chronic Pain and/or disability. Maybe that is what makes everyone so dedicated to helping others. It sure makes for some interesting days!

    We are a registered 501(c)(3) non-profit Organization with the IRS. Our EIN (or Employee Identification Number) is EIN 01-0502619 and all donations to us are tax-deductible.

    We have very little overhead and we have no salaried employees at any level.

    Everyone who works on our programs donates their time and energy. All of our programs rely on tax-deductible donations from those who believe in our cause, and the sale of our Awareness Products.

    We do not charge for our information, such as Information Packets, nor do we require membership fees or dues.

    American RSDHope maintains an RSD Research fund called "HOPE FOR TOMORROW". We raise money for this fund through various methods;

    # 1) Fundraisers - Usually put together by RSD Patients and loved ones and overseen by American RSDHope's Board of Directors. Very, very rarely is a Pharmaceutical or Medical Supply Company involved. The events are usually supported by other patients, loved ones, family, friends, and the local townspeople; spreading awareness as they raise funds.

    For example;
    FUNDRAISERS FOR AMERICAN RSDHOPE

    2) Donations - These range from the simple $2 a month donations, $2 and $5 deductible donations on the product order forms, and the direct donations to the Research Fund that people can make either to American RSDHope, through one of our events, at one of our events, or they can go to the on-line catalog and make a donation through that.

    For example;
    DONATIONS TO AMERICAN RSDHOPE

    3) Profit from Sales of Products - We have various items in our On-line Catalog, available either through our website or through various live functions, that are designated as having all profits going into our HOPE FOR TOMORROW Research Fund. These are - National RSD Awareness Pin and National RSD Awareness Bracelet mainly.

    For example;
    RSD AWARENESS BRACELETS AND PINS

    You can read about our Research Fund, it's Mission Statement and our Vision for Research by going to AMERICAN RSDHOPE RESEARCH FUND - STATEMENTS AND GOALS

    Education of Health Professionals and Patients is a major tool towards helping patients to avoid living a life of pain caused by this disease. Because the lack of information contributes to the hopelessness of an RSD Patient, our organization, and in fact our name, RSDHope, is dedicated to filling that gap.

    We urge you to share any and all information you find on RSDS here and on other Web sites with your treating physician. This information is not meant to replace any that your doctor may have shared with you, but rather to supplement it. We are not medical professionals and we do not offer medical advice. We welcome comments, suggestions and questions.

    In our many sections we try to provide information for not only the patients and loved ones who visit but also the Doctors, Nurses, and Physical Therapists and EMT's who come by to see the latest information. We are constantly updating and upgradint eh website in order to provie you with the best information possible to help you fight this disease.

    In July of 2004 we lost Dad O to cancer. He was a huge loss not just to our family, where he was a most beloved husband, father, and grandfather; but also to the RSD Community where he was a strong voice for patients and loved ones for a decade.

    We continue towork in his honor and have been blessed with the addition of my sister Karen to the organization who has taken over many of Dad O's former responsibilities. We know he looks down on us and with all of our other friends who have crossed over, helps us in those hard times when we aren't sure we can continue.

    Next, read about our Board of Directors! We have all family members on our Board of Directors but they represent many walks of life.

    MEDICAL DISCLAIMER


    We should also state the following:

    A) Who we are not. The American RSDHope Organization is in no way nor do we pretend to be in any way Drs., Nurses, or any other type of Medical Professionals.

    B) Who we are. We are patients, family members, friends, and concerned others.

    C) What we do. Distribute information on/about RSDS to any and every one who requests it, all across the USA, mainly through our website and our newsletters. If you don‘t own a computer, find one that you can use, through the school system, library, etc. It will change your life!

    This information can take many forms; from a study written by Drs. and/or Researchers, newspaper articles on RSD, individuals and their personal stories and struggles, articles, book excerpts, Seminar and Support Group information; to our Internet Programs such as our Web Site and all the programs therein.

    Our material should not be viewed as replacing your own current medical course-of-treatment, but rather should be used in conjunction with your care-givers to help improve your quality of life. If you have questions that are not addressed in the following material, feel free to email us at [email]rsdhope@roadrunner.com[/email]

    Click Here: RSDHope
    « Last Edit: May 26, 2009, 10:54:57 PM by PhoenixRising »

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