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Thread: Is the SCI community ready for crowdfunding for sci regenerative research?

  1. #1

    Is the SCI community ready for crowdfunding for sci regenerative research?

    dear all?
    Is the SCI community ready for crowdfunding for sci regenerative research?
    It's the question that came to my mind after viewing the latest webinar of Fastercure on crowdfunding and crowdinvesting for medical research.
    Typically, such projects requests that the close community would deliver one third of the targetted funding amount.
    Is our community motivated enough to engage into such initiatives (supposing that we have a good project to fundraise upon, of course, which is a sine-qua-none condition).

    I asked the same question on our facebook page. Please visit us there and like us. www.facebook.com/endparalysis
    Thanks.
    Corinne
    www.endparalysis.org

  2. #2
    Looked at your website. A few general observations and questions:

    Is this core team member http://endparalysis.org/team/teamcat/chris-powell/ the same person who posts on CareCure as GRAMMY? Old Avitar picture maybe? If so, she's one of my favorite contributors on this site and has a sharp mind for science. Good catch for your organization.

    The financial info section for endparalysis is TBA. Please update when it's available.

    Your first project is stated as: bringing Chondroitinase to clinics. I'm to understand that it's a project led by www.spinal-research.org in the U.K. with a goal to apply for an investigational new drug trial approval by 2017. They have a DONATE button on their site too. If I were seeking to donate in support of this research, why wouldn't I go straight to the lead team ?

  3. #3
    Quote Originally Posted by 2drwhofans View Post
    Looked at your website. A few general observations and questions:

    Is this core team member http://endparalysis.org/team/teamcat/chris-powell/ the same person who posts on CareCure as GRAMMY? Old Avitar picture maybe? If so, she's one of my favorite contributors on this site and has a sharp mind for science. Good catch for your organization.

    The financial info section for endparalysis is TBA. Please update when it's available.

    Your first project is stated as: bringing Chondroitinase to clinics. I'm to understand that it's a project led by www.spinal-research.org in the U.K. with a goal to apply for an investigational new drug trial approval by 2017. They have a DONATE button on their site too. If I were seeking to donate in support of this research, why wouldn't I go straight to the lead team ?
    Right you are 2drwhofans. Very observant. I'm one and the same person. Thanks so much for your kind comments. You can indeed donate directly to the lead team in the U.K. or endparalysis.org partnering team based out of the Netherlands if you want to further the Chondroitinase research. I'm assuming you're up to date on the efforts currently taking place on that. If you have any questions, please feel free to ask and I'll find the answers you need.

  4. #4
    Quote Originally Posted by 2drwhofans View Post
    Looked at your website. A few general observations and questions:

    Is this core team member http://endparalysis.org/team/teamcat/chris-powell/ the same person who posts on CareCure as GRAMMY? Old Avitar picture maybe? If so, she's one of my favorite contributors on this site and has a sharp mind for science. Good catch for your organization.

    The financial info section for endparalysis is TBA. Please update when it's available.

    Your first project is stated as: bringing Chondroitinase to clinics. I'm to understand that it's a project led by www.spinal-research.org in the U.K. with a goal to apply for an investigational new drug trial approval by 2017. They have a DONATE button on their site too. If I were seeking to donate in support of this research, why wouldn't I go straight to the lead team ?
    Dear 2drwhofans
    I am very sorry for the late answer. I could not reply earlier due to health issues.

    1. Members: Yes, the Endparalysis Foundation is happy to have Grammy on its team, especially for scientific advise, both in its core team and in the scientific committee.

    2.Financial transparency: The financial info section of the website will be updated when we have relevant information to show. The foundation was launched at the end of June this year, just before the holiday period. It means that we were only able to start with some fundraising in the beginning of September. We plan to update the section every 3/4 months at least. Which means that you should see some data there by the end of November/ December. We will go for a 100% transparency, and we will give 100% of the received funds to research. First payment should be made by end December 2014 to our first project, ie Chondroitinase.

    3. Why give to Endparalysis Foundation? You are right, bringing chondroitinase to clinical trial is a project led by Spinal Research, which is also a non-profit, does great work and raises revenue from fundraising.
    What's important, at the end, is the success of the project, but the reasons why we invite you to give to/through the Endparalysis Foundation are as follows:

    - it will ensure that 100% of your donation be allocated to the Chase project and nothing else (or later-on, one of our next projects). It is a very important differentiating point of the Endparalysis Foundation against other organizations that we fundraise for projects that will bring us, the spinal cord injury community, one step further to the cure, rather than feeding/growing/maintaining an organization. (Those ''organizations'' with a bigger structure and with staff are very necessary to our mind, and we absolutely do not mean to downplay their role, but we also see the need for a complementary, -3.0 style - structure/network that will help us get patients priorities translated into actions and into results, without any extra cost). We will keep lean and agile so that we can focus on a single goal: contributing to the cure of chronic injuries. It means that we will stay free to select and support a certain number of projects on the condition that they bring us one step closer to recovery by connecting the dots.

    - by giving to this project through Endparalysis Foundation you will be recognizing the work done by the foundation, which does not only consist in collecting funds for research projects, but also in expressing the voice of the patients and highlighting the need for a focus on research with a high potential of bringing some kind of recovery level to chronic patients, rather than lab research of which it is known that they will never be brought to clinical stage. Also later-on, the idea is to bring researchers together to consider ''the big picture'', discuss the gaps to cure and the way to bridge those gaps (e.g. through combination therapies).

    Well, sorry for the long answer, but I hope it does reply to your questions. Otherwise please let me know.
    Kind Regards.
    Corinne.
    www.endparalysis.org
    www.facebook.com/endparalysis
    Last edited by Corinne Jeanmaire; 09-25-2014 at 08:23 AM. Reason: grammar

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