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This topic has 10 replies, 5 voices, and was last updated 2 years, 2 months ago by Kevin Schaefer.

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    • #17071
      Kevin Schaefer
      Keymaster

      I get annoyed when people use GoFundMe to finance their trips/vacations, but I do think it’s justifiable in the case of attending Cure SMA and other medical conferences. A friend of mine just created a fundraising page so she could attend this year’s Cure SMA conference in Disneyland, and I encouraged her to do it. I think it’s extremely beneficial for people in the community to attend at least one conference in their lifetime; but for a lot of SMA individuals and families, it’s difficult to afford both travel and hotel costs.

      Have you ever done or considered doing a fundraiser for something like this? Like many people, I hate asking others for money, but sometimes it is justifiable.

    • #17078
      DeAnn R
      Keymaster

      I haven’t tried a GoFundMe, but I did do fundraising to help pay for the trip to get my service dog. Living on a limited income when big expenses like this arise it’s helpful to be able to raise funds to offset expenses.

      • #17083
        Kevin Schaefer
        Keymaster

        Yeah I did one for the robotic arm. I haven’t done it for traveling, but I think it’s a good option for some people. Just depends on the situation.

    • #17080
      Alex Telenson
      Participant

      I would not personally do it, but I am fortunate enough to incur the costs. However, this is largely in part because I find the conference of such value that I actively budget to accommodate for what is essentially a vacation. Any medical reason or necessity to attend this conference is mitigated by simply speaking with a neurologist. While I completely understand that the expenditure of ~$2,000 is by no means a negligible amount, the price is not such that it is unfeasible and warrants a gofundme. Compare this to say a gofundme trying to raise funds to receive Spinraza. If insurance doesn’t pay, it is actually impossible to afford it. Additionally, there are ways to reduce the cost for the conference. For example, using a credit card to accrue points which could be put towards flights and hotels or waiting till the conference is at a closer location. Would the individual be able to go in the near future if it was held – for example – in New York, LA, or Chicago?

      I understand that some may be in a situation where I would believe it justifiable to start a gofundme, but this warrants additional information and requires a case by case evaluation. If this was a once in a life time conference, or the location was the same every year, my thoughts may be different, but this is not the case. I do mostly agree, although remain somewhat equivocal, that an individual with SMA should attend this conference at least once, but I am pretty sure – at least for most people – that this does not warrant a gofundme.

       

      • #17084
        Kevin Schaefer
        Keymaster

        I get what you’re saying. I’m paying for the costs of myself and my caregiver as well, and I’ve been saving up for months. But I do understand that not everyone is in the same position as me, and it really does vary on a case-by-case basis.

        Are you going to be at the conference this year by the way?

    • #17100
      Alex Telenson
      Participant

      I am going! But I registered for the research portion, but there is definitely overlap.

      • #17110
        Kevin Schaefer
        Keymaster

        Awesome! I’ll see ya there at some point.

    • #17200
      Kelly Miller
      Participant

      I think the good part about crowdsourcing is that it’s open for people to either donate or not. There have been several on there that I thought were pretty stupid, but others have seen fit to give money toward them. That’s the beauty of it – we can each decide individually if we want to give for something or not.

      I did have one in the past. It was on YouCaring. I raised money for the functions on my new wheelchair that were out-of-pocket and I couldn’t afford. It was for the elevation and the Bluetooth capabilities. They both came out to a little over $1000, but I just didn’t have the extra money to pay for them. Fortunately for me, I had plenty of family and friends who were able to give $50 or $100, a couple even gave $20, and I quickly reached my goal. I didn’t set my goal over the amount I needed, and I didn’t keep it open after I attained the limit. I think it’s wrong to keep taking money when you’ve already gotten what you asked for. It has helped me to have the capabilities I needed on my chair that I could never have gotten on my own.

      • #17202
        Kevin Schaefer
        Keymaster

        That’s a really good point about crowdfunding. It’s your choice to give. And I agree that it’s absolutely justified in situations like the one you raised money for. After all, our wheelchairs are basically our bodies.

    • #17213
      Marcy Fantel
      Participant

      Another option to consider, which I think is more of a win win than a GoFundMe page is Neighbors Fundraising for Neighbors (www.nf4n.org) Anyone can set up a free page if they are fundraising for medical expenses or travel, including conferences. Anyone who donates, since it is a 501c3 will receive a tax donation receipt which some people prefer. NF4N takes a small percentage.

      Personally, we have had a page on NF4N for over 2 years. We have fundraised for an addition we built for Ray, repairs to our handicap accessible van, ceiling lift system, and outdoor lifts. Now, we will be fundraising for service dog training for Ray’s new puppy.

      Some family and friends did not send us checks to help with Ray before NF4N but a few send money in regularly as part of their donations to charities at the end of the year, for a birthday, etc. I highly recommend NF4N as an option.

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