Patients as volunteers – can it work?

I’d like to start a new non-profit website that serves as a network for patients who want to volunteer some of their time to important causes.

A lot of patients suffer from feeling like they can’t contribute to society, especially when they can’t work. I certainly felt that way when I was on disability in 2001 from severe Crohn’s flares. I hope that this website will help many patients to feel a greater sense of self-efficacy and to know that their skills and talents are valuable and needed in the world.

I still haven’t chosen a name for the network and I’d like your feedback. Could you help me choose a name for it? Please go to my little survey at: Pick a name. If you have already voted, it is okay, you can vote again as this is a round for finalist names. Thanks!

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2 Comments (+add yours?)

  1. Carissa Haston
    Feb 09, 2011 @ 09:09:54

    Our organization was founded in 2001 and is all patient run. The goal of it was to provide patients a way where they can contribute back to society around their own sick/well schedule and from their computers using any skills they have. They work an hour here and there, any time of day or week, and feel like they are not useless and have a lot to give in spite of being sick.

    We do a lot of online activity, but we also do political lobbying and awareness events nationwide so we aren’t all virtual. The biggest challenge is sometimes getting things done because of unexpected flare ups, but because we all understand, we operate by a team effort and someone else will pitch in and pick up the work of another when they are not able to get it done. Rarely does any of our work require a deadline, so patients are able to operate at their pace for the most part. It’s been very successful and we have become the largest organization in the world for the conditions we represent and are highly respected by the top medical professionals and companies in the nation. We have new volunteers joining all the time and have made an incredible impact.

    So, it does work as we have been operating for ten years and no one gets paid. Often the ones who are sick are the most devoted and don’t need pay because it’s a passion that drives them and the feeling of a fulfilling life by being able to give back. Please contact me if you have questions on how we have become successful! I would love to see you achieve maximum success!

    Reply

  2. Erica
    Feb 16, 2011 @ 10:50:57

    Carissa: What a cool organization! I have gastroparesis also, by the way, though it is relatively mild most of the time (I did have a little flare-up last week and lost my dinner). I will definitely read more about your site and your work and may be in touch! I will also post your link on some of the IBD listservs as I am sure I am not the only one who has an IBD and gastroparesis “dual diagnosis.” Thank you for reaching out!

    Reply

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