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Effective and Efficient Spinal Cord Injury Charities - Opinions

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    Effective and Efficient Spinal Cord Injury Charities - Opinions

    Since GJ's passing, I am restating and reworking my estate trust, will, etc. I want to leave some portion of the estate to several charities. I have a couple in mind and want to add one that addresses spinal cord injury. I have checked the various websites that rate charities for effective and efficient use of donated funds, but spinal cord injury charities are not well represented in the ratings because their revenues from donations are low in comparison to the big, well known charities.

    I am sure there are as many suggestions for organizations as there are people who may respond to this post, but I would like to hear from the Care Cure Community about the best organizations in regard to their work, efficient and effective use of funds.

    Thanks,
    NL

    #2
    I don’t know about the smaller charitable organizations, but all of the ones that I have ever looked into left me with the impression that they are more interested in making their operators wealthy and that they are all a big scam. The CEO’s all make like a quarter mil or more for whatever it is that they do running the charity, not to mention the other board members are also paid an exorbitant amount as well. Not for profit just means that they don’t Try to provide a product or service with the expectation of making a profit. The people involved in the operation of the charity are usually very well compensated for their participation often far more than the actual people that the charity is purported to be helping. That being said, I guess that where you donate it really depends on what you want your money to help with that would determine where you donated it. Are you interested in research, or helping individuals obtain equipment that are less fortunate than yourself, or helping with employment, or education, or housing, or feeding, or whatever else?

    Comment


      #3
      I respect United Spinal

      Comment


        #4
        I agree. Look at United Spinal Association and the Dana & Christopher Reeve Paralysis Foundation.

        Dr. Young's Keck Center also could be a place to put donated funds going to a good cause.

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


          #5
          I think you know I work for Dr. Young. If you are wanting to fund research and clinical trials, Wise is the researcher to invest in. He has brought more therapies to clinical than any other in the field. He doesn't do research just to do research, his goal is to bring therapies to human clinical trials and improve our lives.

          A group that needs direct funding are the families of those that are newly injured. As you know, the costs in the beginning are outrageous, funding from an outside source is greatly needed. Many organizations also provide grants for adaptive equipment to those who are looking to become more active.

          Comment


            #6
            Jim, could you send me a private message with the actual name of Dr. Young's group and the name/names of groups that aid families, so I may look into them personally.

            Thank you.

            NL

            Comment


              #7
              Originally posted by nauticalmike View Post
              I don’t know about the smaller charitable organizations, but all of the ones that I have ever looked into left me with the impression that they are more interested in making their operators wealthy and that they are all a big scam. The CEO’s all make like a quarter mil or more for whatever it is that they do running the charity, not to mention the other board members are also paid an exorbitant amount as well. Not for profit just means that they don’t Try to provide a product or service with the expectation of making a profit. The people involved in the operation of the charity are usually very well compensated for their participation often far more than the actual people that the charity is purported to be helping. That being said, I guess that where you donate it really depends on what you want your money to help with that would determine where you donated it. Are you interested in research, or helping individuals obtain equipment that are less fortunate than yourself, or helping with employment, or education, or housing, or feeding, or whatever else?
              Very true. By law they are required to use only 5% for charity. Most of the remainder is spent on administration and advertisements as they must spend all money each year. I questioned United Way long ago. They said 15% went to help people for that year. A watch dog group disputed that as being only 12%.

              I like St Judes but have not looked into how much actually goes to hospital/patients. I hope I'm not disappointed when I do.
              Attack life, it's going to kill you anyway
              Steve Mcqueen (Mr Cool)

              Comment


                #8
                A good site for researching any charity is this one: https://www.charitynavigator.org/

                They will tell you how much of their donations go to administration, fund raising, and advertising, and how much actually goes to the benefit of the people they serve.

                For example, here is the page for the Christopher & Dana Reeve Paralysis Foundation:
                https://www.charitynavigator.org/ind...ary&orgid=5066
                This indicates that for 2018 (the last year for which data is available) this charity spent 82.9% on programs and services.

                For comparison, The Paralyzed Veterans of America spent only 60.7% on programs and services:
                https://www.charitynavigator.org/ind...ary&orgid=4295

                (KLD)
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment


                  #9
                  It depends on where you want your money to go. There are many good small organizations focusing on providing needed equipment to people living with SCI. There are others that focus on funding research. As a research scientist I can only comment on organizations that frequently fund the SCI community.

                  A) Craig H. Neilsen Foundation (although they might not accept philanthropic donations, check with them). This is likely one of the biggest funders of SCI research across the spectrum.
                  https://chnfoundation.org/

                  B) Wings for Life Foundation. They fund very effective and to-the-point research projects across the world. They do accept charitable donations and I would put probably as another significant contributor to the SCI research community.
                  https://www.wingsforlife.com/us/

                  C) Unite 2 Fight Paralysis is also another very significant contributor to the SCI community in many ways.

                  These organizations have a rigorous review process of grants before deciding who should be delegated money, and both have a high priority on research with the highest impact and potential to translate into the SCI community.

                  Disclaimer: I have no affiliation with either organization, but I am a scientist who does frequently submit grant applications to both organizations(A & B; because they are major funders of SCI research).

                  Comment


                    #10
                    Originally posted by SCI-Nurse View Post
                    A good site for researching any charity is this one: https://www.charitynavigator.org/

                    They will tell you how much of their donations go to administration, fund raising, and advertising, and how much actually goes to the benefit of the people they serve.

                    For example, here is the page for the Christopher & Dana Reeve Paralysis Foundation:
                    https://www.charitynavigator.org/ind...ary&orgid=5066
                    This indicates that for 2018 (the last year for which data is available) this charity spent 82.9% on programs and services.

                    (KLD)
                    Excellent information. I have drawn up my will, ( 68 years old 43 post-SCI). Most of my net worth is a home and retirement accounts with 1 heir, my son, and grandchildren. I have expressed my desires verbally to family and in writing (will and advance directives) and verbally.

                    I have been greatly impressed with the commitment of the "Christopher and Dana Reeve Paralysis Foundation" and the Reeve family. It would have been easy to want to put the memory of SCI in the rearview mirror but they have remained committed.

                    I will definitely be leaving a donation to the foundation.


                    Side note, I can remember being at work on May 95' here in Virginia and hearing Christopher Reeve had been injured, 100 miles away at a high cervical level, and being saddened at the journey that he and his family faced... they have handled all with class, dignity, and a lot of loyal friends and of course, a lot of hard work.

                    Comment


                      #11

                      St Judes has been on my mind for along time. Not a big fan of research organizations. They mostly dangle carrots to get cash for pay role, using sympathy as a tool. Cash runs out and research updates cease until another research group picks up the cause, usually repeating the same research, usually reporting the same results. It's the mouse research scam.

                      Yes, the expenses for newly injured can be overwhelming. 10 years post injury, I'm still finding financial hurdles. Desperate need of a van for my big chair (I can spend more time in) has reduced my social activity to near zero. Never been a charity case but I now realize that my pride must be put aside. I haven't found an organization that can help with funding a van.
                      Attack life, it's going to kill you anyway
                      Steve Mcqueen (Mr Cool)

                      Comment


                        #12
                        I would also add that many of the spinal cord injury rehab centers have charitable care and you can designate how you want your money used. I am very familar with several of them and have been impressed with how they are able to stretch a dollar so that familes can receive support early on. Look at the list of Model SYstems of Care or some of the VA centers. Families may have the hospitaliztion covered but other costs such as parking, travel, hotel, etc are not covered by insurance.
                        ckf
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                        Comment

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