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Thread: What is being done by us to achieve a cure?

  1. #51

    Lightbulb whewwww!

    Quote Originally Posted by 0xSquidy View Post
    Any idea is good to launch events to get fundings. We need "hands" to do it, having some more organization than this thread would be better too...
    I updated the document with the ideas and also shortened the URL so we can work with:


    Spreadsheet: http://bit.ly/chronicSCI
    Document: http://bit.ly/chronicSCIdoc



    Please help filling those with anything you know.
    Nice.
    Here is a list that I was able to find. Although partial and not all of these organizations are geared towards curing paralysis -- it is mind blowing. This is only in the United States. We could start categorizing by nations at some point?

    I wonder how much money they raise?

    In time I think we need to add links and track down how much each foundation raises. This should be a part of public record?

    Alan T Brown Foundation to Cure Paralysis New York NY USA --
    Bret Neylon Paralysis Foundation Brownsburg IN USA --
    Bryon Riesch Paralysis Foundation Inc. Waukesha WI USA --
    Buoniconti Fund to Cure Paralysis Inc. Miami FL USA --
    Cancer & Paralysis Support Caps of the Lehigh Valley Bath PA USA --
    Family and Friends Caring Paralysis Wilmington DE USA --
    Foundation to Cure Paralysis Inc. Ghent NY USA --
    Heidi Van Arnem Foundation to Cure Paralysis Bloomfield MI USA --
    Illinois Eastern Ia Dist of Kiwanis Intl Spastic Paralysis Res Fdtn Dekalb IL USA --
    Kalis Cure for Paralysis Foundation Inc. Alma MI USA --
    Mississippi Paralysis Association Inc. Term Clinton MS USA --
    Morton Cure Paralysis Fund Minneapolis MN USA --
    Morton Cure Paralysis Fund Minneapolls MN USA --
    National Spinal Cord Society for the Cure of Paralysis Ft Lauderdale FL USA --
    Paralysis Project of America Glendale CA USA --
    Paralysis Research Organization Littleton MA USA 4
    Paralysis Society of America of the Paralyzed Veterans of America Washington DC USA --
    Periodic Paralysis Association New York NY USA --
    Rhode Island Infantile Paralysis Foundation


    Academy of Spinal Cord Injury Professionals Inc. Washington DC USA --
    American Academy of Minimally Invasive Spinal Medicine and Surge New City NY USA --
    American Association of Spinal Cord Injury Nurses Washington DC USA --
    American Association of Spinal Cord Injury Psycologists & Soc Workers Washington DC USA --
    American Spinal Cord Research Foundation Inc. Sault Saint Marie MI USA --
    American Spinal Injury Association Atlanta GA USA --
    American Spinal Research Organization Incorporated Niagara Falls NY USA --
    Arizona United Spinal Cord Injury Association Inc. Phoenix AZ USA --
    Arkansas Spinal Cord Foundation Inc. Little Rock AR USA --
    As If - Austin Spinal Injury Foundation Austin TX USA --
    Bill Bursis Foundation for Spinal Cord Research Hawley PA USA --
    Brian A Wilson Spinal Cord Research Foundation Lexington KY USA --
    Center for Spinal Cord Injury Independence Washington DC USA --
    Central Jersey Spinal Cord Association Inc. New Brunswick NJ USA --
    Council for Value in Spinal Care Philadelphia PA USA 4
    Dennys Spinal Injury Research Fund Rosalia WA USA --
    Families of Spinal Muscular Atrophy Elk Grove Vlg IL USA --
    Families of Spinal Muscular Atrophy Libertyville IL USA --
    Families of Spinal Muscular Atrophy of Louisiana Inc. Metairie LA USA --
    Florida Spinal Cord Injury Association Inc. Tallahassee FL USA --
    Foundation for Advancement of Spinal Knowledge Minneapolis MN USA --
    Foundation for Spinal Cord Injury Prevention Care and Cure Inc. Fenton MI USA --
    Foundation for Spinal Endoscopy Inc. Louisville KY USA --
    Geoffrey Lance Foundation for Spinal Cord Injury Res and Support Newport Beach CA USA --
    Greater Boston Chapter of the Natl Spinal Cord Injury Assoc Inc. Woburn MA USA --
    Greater New York Chapter of the National Spinal Cord Injury Assoc New York NY USA --
    Gridiron Heroes Spinal Cord Injury Organization Schertz TX USA --
    Helping Hands for the Spinal Cord Disabled of Franklin County Chambersburg PA USA --
    Hillcrest Spinal Cord Injury Support Fund Richardson TX USA --
    Institute for Advanced Spinal Research in California Beverly Hills CA USA --
    International Society for Minimal Intervention in Spinal Surgery Thousand Oaks CA USA --
    International Spinal Development & Research Las Vegas NV USA 3
    International Spinal Health Institute Woodstock GA USA --
    James J Savage Spinal Cord Injury Recovery Foundation Spring TX USA --
    Jim Bennett Foundation for Spinal Cord Injury Research Lincroft NJ USA --
    Joseph Anaya Fund for Spinal Chord Injuries Nanuet NY USA --
    Kevin Kitchnefsky Foundation for Spinal Cord Research Tunkhannock PA USA --
    Lars Veen Action Sports Foundation for Spinal Cord Injury Research Salt Lake Cty UT USA --
    Mary and Charles A Parkhill Foundation for Spinal Cord Rehab Bloomfield MI USA --
    Matthew Nagle Spinal Injury Foundation Inc. S Weymouth MA USA 4
    Michael Grimes Foundation for Spinal Cord Research Walled Lake MI USA --
    Minorities Against Spinal Cord Injury Inc. Atlanta GA USA --
    Misner Foundation for Spinal Cord Injury Research Inc. McLean VA USA --
    Napa Spinal Cord Injury Network Napa CA USA --
    National Coordinating Council on Spinal Cord Injury Boston MA USA --
    National Spinal Cord Injury Association Bethesda MD USA 1
    National Spinal Cord Injury Association Urbandale IA USA --
    National Spinal Cord Injury Association Nevada Chapter Las Vegas NV USA --
    National Spinal Cord Injury Hotline Inc. Baltimore MD USA --
    National Spinal Cord Society for the Cure of Paralysis Ft Lauderdale FL USA --
    Nebraska Foundation for Spinal Research Omaha NE USA --
    New Hampshire Chapter of the National Spinal Cord Injury Assoc Londonderry NH USA --
    New Jersey Spinal Education and Research Foundation Eatontown NJ USA --
    Nicholls Spinal Injury Foundation Rochester NY USA --
    Northeast Ohio Chapter of the Natl Spinal Cord Injury Association Chesterland OH USA --
    Paralyzed Veterans of America Spinal Cord Injury Education and T Washington DC USA --
    Paralyzed Veterans of America Spinal Cord Research Foundation Washington DC USA --
    Paul Jacobson Spinal Cord Foundation San Diego CA USA --
    Project Support for Spinal Cord Injury Panorama City CA USA --
    Project Walk Spinal Cord Injury Recovery Center Inc. Carlsbad CA USA --
    Share Spinal Foundation La Jolla CA USA 3
    Sisyphean Spinal Society Inc. Tampa FL USA --
    South Carolina Spinal Cord Injury Association Columbia SC USA --
    Spinal Cord Foundation Farmingville NY USA --
    Spinal Cord Group of Collier County Inc. Naples FL USA --
    Spinal Cord Injuries Suck Nfp Chicago IL USA --
    Spinal Cord Injury Association of Illinois La Grange IL USA --
    Spinal Cord Injury Association of Oklahoma Inc. Midwest City OK USA --
    Spinal Cord Injury Network International Santa Rosa CA USA --
    Spinal Cord Injury Network of Metropolitan Washington Inc. Arlington VA USA --
    Spinal Cord Injury Recovery Project Inc. Boulder CO USA --
    Spinal Cord Injury Recovery Project Inc. Denver CO USA --
    Spinal Cord Injury Research Foundation Birmingham AL USA --
    Spinal Cord Injury Support Group of South Florida Sunrise FL USA --
    Spinal Cord Living Assistance Development Inc. Sclad Hialeah FL USA --
    Spinal Cord Society Fergus Falls MN USA 1
    Spinal Cord Tumor Association Inc. Jay FL USA --
    Spinal Health International Inc. Gainesville FL USA --
    Spinal Injury Tournament Batavia NY USA --
    Spinal Muscular Atrophy Foundation New York NY USA --
    Spinal Orthopedic and Neurological Advancement and Restoration Tulsa OK USA --
    Spinal Outcomes Research Foundation Southlake TX USA --
    Spinal Research Foundation Reston VA USA --
    Spinal Research Foundation Inc. Louisville KY USA --
    Testaverde Fund for Spinal Cord Injury Inc. Hauppauge NY USA --
    Tethered Spinal Cord Syndrome Association Inc. Arlington Hts IL USA --
    The Aspinall Foundation USA Los Angeles CA USA 4
    The Old Dominion Chapter of the National Spinal Cord Injury Richmond VA USA --
    Today S First Step Inc. A Foundation for Spinal Cord Injuries Salt Lake Cty UT USA --
    Tri-State Advocacy Project for Spinal Cord & Burn Injured Survivo Collegeville PA USA 3
    United Spinal Association Inc. Queens NY USA --
    Utah Head and Spinal Cord Injury Prevention Program Salt Lake Cty UT USA 4
    Wayne H & Julia E Aspinall Foundation Inc. Grand Jct CO USA --
    Wayne N Aspinall Memorial Commission Inc. Palisade CO USA --
    William Heiser Foundation for the Cure of Spinal Cord Injuries Inc. Wantagh NY USA 4
    « Prev | 1-95 | Next »
    Name City State Country
    Code
    Adult Stem Cell Initiative Inc. Rochester NY USA --
    Advanced Generation Excellence Standards Educational System McAllen TX USA --
    Alfi Stem Cell Research and Education Foundation Pasadena CA USA 4
    Envision Excellence in Stem Education Baltimore MD USA --
    International Society for Stem Cell Research Deerfield IL USA --
    Iseh Society for Hematology and Stem Cells Washington DC USA --
    John Paul II Stem Cell Research Institute Iowa City IA USA --
    Life Stem Cell Institute Inc. Delray Beach FL USA 4
    Maryland Families for Stem Cell Research Inc. Annapolis MD USA --
    Michigan Citizens for Stem Cell Research and Cures Southfield MI USA --
    New York Stem Cell Foundation Inc. New York NY USA --
    Sabrina Cohen Foundation for Stem Cell Research Inc. Miami Beach FL USA --
    Stem Cell Cancer and Regenerative Medicine Research Inc. Boynton Beach FL USA --
    Stem Cell Industry Council Inc. Herndon VA USA 4
    Stem Cell Net Foundation Las Vegas NV USA --
    Stem Cell Research Center for the Burnham Institute La Jolla CA USA --
    Stem Cell Technology Foundation Pomona CA USA --
    Stem Cells for Hope Baton Rouge LA USA --
    Texans for Stem Cell Research Austin TX USA --
    The Yury Verlinsky Center for Stem Cell Research and Education Ltd. Chicago IL USA 4
    Wjwu & Lynn Institute for Stem Cell Research Santa Fe Springs CA USA --
    World Stem Cell Foundation

  2. #52
    Quote Originally Posted by Chaz19 View Post
    I wonder how much money they raise?

    In time I think we need to add links and track down how much each foundation raises. This should be a part of public record?
    some details should be available on www.guidestar.org - look for 990s

  3. #53
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    Angry Time to let the “CURE WATCHDOGS” out!!!

    Chaz turned me onto this thread earlier tonight and I have to say it is one of the most insightful and intellectual discourses regarding the cure movement I have enjoyed reading in a long time.


    Over seven years ago Chaz and I came to these pages looking for others who were cure minded. I know full well that there are far, far more dedicated advocates on Care Cure than naysayers. I have had the privilege of working with many of them and they are intelligent, tough advocates for the cure. This community pushed Washington hard and got the CDRPA passed. This was an incredible accomplishment and demonstrated the political power that this community has.

    Many of these voices, like mine, disappeared from these pages but I bet they are still reading what you have to say. It would be great to hear them again.

    When Chaz told me that he wanted to start a list of all of the non-profits raising money for paralysis and spinal cord injuries and how much they money they raise, I thought, Wow! What a brilliant idea! For the first time a national registry of these foundations etc. (and why not an international list as well) can be created. I bet the total numbers will be staggering.

    And Leo is right on with regard to the priorities of some of these bigger organizations but what about the smaller ones as well. With a comprehensive list of every non-profit we can start to rate them on their “Cure Attitudes” How much money do they raise each year and where does that money go?
    There must be hundreds of foundations out there and each one of them needs to know that there are “cure watchdogs” taking a hard look at them.

    This could be the first step in re-organizing the cure community.

  4. #54
    Quote Originally Posted by Scott Pruett View Post
    some details should be available on www.guidestar.org - look for 990s
    Good link - if you type in 'spinal cord' and search there are many many organizations out there.

    I remember when Stepnow started that we tried to contact numerous spinal organizations and foundations but sadly heard back from only a handful. I wonder how much communication there is between any of them.
    Compiling this 'Cure Watchdog' list seems to me to be a good and constructive start to assessing the issue of who is doing what and where, and how we can influence them to combine resources towards cure research/clinical trials.

    For the record, Stepnow never got involved in fund-raising at all - it seemed that there were already so many organizations out there driving for donations so we chose to try to operate differently. Of course without funds it becomes difficult to do anything significant so it is easy to see why so many ask for donations just to survive.
    Last edited by carbar; 02-22-2010 at 06:39 AM.

  5. #55
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    Just a few thoughts:

    It really would be great to hear from inactive CC members who are interested in a cure. One of the things about CC that can be improved is retention of active members in order to build a significant base.

    Also, in my opinion, as CC builds a significant base, I think it needs to find a way to keep track of the funds it members generate and their other efforts. There is something about putting your money and efforts where your mouth is that gets attention and lends legitimacy to what you say.

    I think this is a great thread and applaud those who are participating.


    Quote Originally Posted by bostondad View Post
    Chaz turned me onto this thread earlier tonight and I have to say it is one of the most insightful and intellectual discourses regarding the cure movement I have enjoyed reading in a long time.


    Over seven years ago Chaz and I came to these pages looking for others who were cure minded. I know full well that there are far, far more dedicated advocates on Care Cure than naysayers. I have had the privilege of working with many of them and they are intelligent, tough advocates for the cure. This community pushed Washington hard and got the CDRPA passed. This was an incredible accomplishment and demonstrated the political power that this community has.

    Many of these voices, like mine, disappeared from these pages but I bet they are still reading what you have to say. It would be great to hear them again.

    When Chaz told me that he wanted to start a list of all of the non-profits raising money for paralysis and spinal cord injuries and how much they money they raise, I thought, Wow! What a brilliant idea! For the first time a national registry of these foundations etc. (and why not an international list as well) can be created. I bet the total numbers will be staggering.

    And Leo is right on with regard to the priorities of some of these bigger organizations but what about the smaller ones as well. With a comprehensive list of every non-profit we can start to rate them on their “Cure Attitudes” How much money do they raise each year and where does that money go?
    There must be hundreds of foundations out there and each one of them needs to know that there are “cure watchdogs” taking a hard look at them.

    This could be the first step in re-organizing the cure community.

  6. #56
    Senior Member 0xSquidy's Avatar
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    I'm so happy that more people got involved in this thread, i was getting kinda frustrated some days ago...

    Listing all the fundations is a great idea, i'll sart working on that later in the day (i'll try to spreadsheet-it and organize the list... help is appreciated, and anyone can do it so no excuses!).
    Once we have all of that in our hands, we can start mass mailing those organizations to ask for records or fund status. Ask for volunteers to help this initiative and so on... we are going to need a lot of people.

    I'm still thinking on the key of coordinaten working actively everywhere. If we can corganize A LOT of people (i think we can pull out lots of volunteers / survivors from those assotiations besides this forum) we will hierarchize this human potential... like sorting people by it's location or range of action and by it's activity.
    For example, if we can get to manage fundings in a coordinate way, we are going to need advisors. People who's specialized in understanding and deeply analyzing clinical trials that are coming up, to narrow the target and come up with a decision everytime it's needed. We'll need also somebody to track all the outcomes.

    We'll also need people that will be aware of any public activity that has good potential in bringin atention. Any public events, TV, radio, school / college speeches... We are in a f* wheelchair, people can see that and we'll find more open doors than closed ones. USE THAT

    We have to gather all the ideas we can get in more documents and get that hierarchy captured in a document with names, e-mails and any usefull contact information to get hands on.
    The first dumb idea that comes to my brain: design some cool poster with the idea of get people's attention with some radical message like "How would you feel if you suddenly couldn't walk for ever?" and some brief description about what a spinal cord is, some stats and "our" website (or something arranged by/from non profit fundation sites). We can get funds, awareness and help out of that, and everyone can stick posters in his/her college, work, street... that's no big deal and if we are a lot of people doing that...folks that's free good marketing.


    We have to gather an initial team and start building this up, we are on the good track.

    To me, first step is start working on organizing all of us.

    Please any thoughs, ideas, complaints are welcome.

    Thank you!

  7. #57
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    OxQuidy,

    May I offer a bid of advice...pace yourself....this is a marathon not a sprint. It is a great idea to get a lot of people involved but the reality is it won't happen that way. Though many support the effort only a few will step up but that's ok. It is difficult to organize a large group of people. Sometimes it is better to be lean and mean. Lead and others will follow.

    It really doesn't take a lot of people to push this effort just dedicated ones, which abound on this site.

    I love Leo's Plan B...... let us change the mind set of the non profits. They have been like ships floating out in the vast sea, never seeing each other and each setting their own agendas with responsibility to no one. Yet they use the name of those in this community for fund raising events that help them sustain themselves.

    Time to call them out. Time to take a hard look at how much money they raise and where it goes Time to hold them accountable,make them uncomforable. Time to expose the self serving and to throw our full support around those that support our cause.

    The question was asked about the Christopher and Dana Reeve Foundation. Are they dedicated to finding a cure or are they just trying to protect their jobs and their stream of income? Christopher Reeve would have been all over Wise and other's hounding the crap out of them about their discoveries. My experience with the Reeve Foundation since the passing of Chris and Dana, makes me think of them as elitists, same with the Miami Project. Do they come to this site and interface with this community? No, it is below them. With the rallies in DC they only jumped on when this community made it happen. Did they make it happen, no way but when dedicated injured people here at CC made it happen they wanted a piece of the pie and the spotlight. Tried to push the real advocates aside and take over the show. Didn't happen! The true power is here with each and everyone of you.
    I truly believe they are intimidated by this community because they know you are the real deal.

    Look we all need to work together but until this community calls out these organizations it is going to be the same oh, same oh. Sad but true.

    Do you sense that I am pissed? Well, you are right and it is time for everyone to get pissed. I for one am going to focus my anger and frustrations on these non profits.
    Shame, shame on them if they are not dedicating a good portion of their energies to finding a cure. For those that do, let us throw our full support behind them.


    But first we need to find each and every one of them and develop a rating system for their "Cure Attitude". Look at the list already and this is just one day and a few people.
    This is big money raising big money in the name of those with spinal cord injuries and paralysis. Well, they are about to hear from that community.

    We can move these organizations through You Tube and Facebook. None of them are going to want to have a negative rating.

    So what do we call ourselves? "The SCI Cure Watchdogs"? or just "The Dogs"

    What is our goal? It is to get all of these organizations to adopt a "Cure Today" policy and to drive them to seek out and invest in the best research ready for clinical trials.

    These organizations are our organizations. We don't want to alienate them but we also don't want to pander to them. When they use this community to market themselves and to raise money for themselves they have a responsibility to do what is best for this community and in my opinion that is to do whatever they can to advance the search for a cure.

    Oh, and I do not believe we need to start "another” foundation or separate organization.
    To me that is bullcrap. You want to be part of this fight this is the place to do it.
    No dues, no conferences, no guest speakers, no cost, just your mind, your time and your voice. Moms, Dads, sisters, brothers, husbands, wives, cousins, friends, aunts, uncles,
    dogs and cats all welcome. All needed. Just bring your thoughts, prayers and support.

  8. #58
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    Scott,
    Great site, also typed in paralysis. Just amazing the numbers.
    Any idea how we can down load this list for the spreadsheet?

  9. #59
    Spreadsheet: http://bit.ly/chronicSCI
    Document: http://bit.ly/chronicSCIdoc


    Good thoughts everyone. I think the first step is to identify the organizations. Once we have this information than we can come up with an idea o how to best contact.

    Let's go with the spreadsheet and use the document as a rough sketch to throw down scattered information.

    Thoughts?

  10. #60
    Good discussion thus far. Forgive me in advance if this reply is brief; grad school is keeping me stupid busy & I'm replying on my phone. The idea of looking at existing .orgs is solid, not sure why that hasn't been done before.

    If the numbers add up, perhaps it'd be worth forming a coalition of sorts. Organizations/foundations could be offered opportunity to join & voluntarily enter a contract of accountability... with each other and with consumers.

    A major hurdle is establishing credibility, as .orgs would [hopefully] be asking "why?" With careful planning and a well-defined mission/vision, it could work with relatively little capital required.

    Educating the public to an effective level, or attempting to as individuals, is a lost cause IMO. We're "just another group" who needs a cure. Sympathy is great but empathy is what's needed on a large scale, which is unrealistic to anticipate ever really happening... but I certainly welcome challenges to my pessimism on that front... I've just been injured > 11yrs & haven't seen any widespread changes (re: public education).

    That said, imagine if a majority of this list of foundations/.orgs joined together (even partially) with a common voice and mission. The possibilities would then be much greater.

    Anyway, those are just a few thoughts I had earlier today... feedback/critique is welcome.
    Last edited by -scott-; 02-22-2010 at 10:26 PM.

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