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Your financial support fuels The Stiff Person Syndrome Research Foundation's mission to find a cure for SPS.


  • What is the best way to support The Stiff Person Syndrome Research Foundation?

    Become a monthly donor! You set the amount to give, and you can cancel anytime. For the same amount of effort as a one-time donation, a monthly donation provides a reliable source of support for The Stiff Person Syndrome Research Foundation. Monthly donations are easy, affordable, and more impactful.

  • How do I create a Facebook Fundraiser?

    Facebook Fundraiser Tutorial Video

    On your laptop:

    1. Open your own Facebook page.
    2. In the search bar, type in the nonprofit you want to create a fundraiser for. In this case, type in “Stiff Person Syndrome Research Foundation” it should pop up.
    3. Click on it – and click it again to get all the way into The SPSRF page.
    4. Near the top, you’ll see a “fundraisers” tab. Click it.
    5. You’ll see all of the fundraisers, past and present. On the right, click on the blue words: Raise Money
    6. On the next page, you can edit your fundraiser. The right side is your desktop preview, so you know what your fundraiser will look like. The left side is for editing. Choose generic fundraiser. Select a monetary goal. Edit the picture, choosing something personal. Edit the title and language to make it personal – what is your why for supporting this cause?
    7. Then click “Create.”
    8. After you create a fundraiser the most important thing to do is be the first person to donate so that your fundraiser doesn’t sit at zero dollars.

    On your iphone:

    1. Go to your own Facebook page.
    2. In the search bar type in “Stiff Person Syndrome Research Foundation.”
    3. Click on The SPSRF Facebook page.
    4. This is very important: Facebook shows you posts. You need to click on “about.”
    5. Once you are in “About,” scroll down to the fundraisers.
    6. Click on the 3 dots to the right and choose “Raise Money.”
    7. Then edit the photo, the title, the description, the amount, the end date for the fundraiser.
    8. After you create your fundraiser, make sure to donate to it!
    9. Facebook will prompt you to share it with friends, on your feed, your story, etc. We suggest you share it everywhere. When you share it on your feed, make sure the privacy setting is on Public so many people can see it.
  • Are there other ways to give?

    Yes, there are many ways to give to The Stiff Person Syndrome Research Foundation.

    Be a fundraiser.

    Create a Facebook fundraiser for The SPSRF easily by following the steps outlined here.

    Give through your Donor-Advised Fund.

    You have the flexibility to recommend how much and how often money is gifted to The SPSRF. Please be sure to use our legal name, The Stiff Person Syndrome Research Foundation Inc., and federal tax identification number 84-2291780.

    See if your company participates in a corporate match to your charitable donations. 

    Many employers will match — sometimes even double or triple! — your donation.

    Raise awareness. 

    Follow The SPSRF on FacebookInstagramTwitter, and LinkedIN so you can share awareness-building posts in your network. SPS is said to strike one in a million people, and for each person with SPS we need every one of those million other people aware of and supporting the research for a cure.

  • How does The Stiff Person Syndrome Research Foundation use funds?

    In our first two years, we donated $90,000 raised for research to Johns Hopkins Stiff Person Syndrome Center. As of late 2022, the organization is focused on creating a Patient Registry/Natural History Study to facilitate research for better treatments and a cure. We remain committed to raising awareness of SPS, especially among primary care physicians and neurologists, to reduce the time to diagnosis and the suffering.

  • Will I get a receipt?

    The Stiff Person Syndrome Research Foundation is a 501(c)3 nonprofit, tax-exempt organization designated by the Internal Revenue Code. When you contribute over $5 to The SPSRF, you will receive a charitable tax receipt for income tax purposes.

  • Is my donation secure?

    The Stiff Person Syndrome Research Foundation takes every precaution to protect our donor’s information. When you submit sensitive information via our website, your information is protected both on- and off-line. We use industry standard security protocols to keep you, and your information, safe.

  • How can I contact you?

    To contact us, please email

  • Is this donation tax deductible?

    The Stiff Person Syndrome Research Foundation is recognized as a tax-exempt charitable organization under section 501(c)3 of the Internal Revenue code.

    To claim a donation as a deduction on your United States taxes, please keep your email donation receipt as the official record of your donation. You will receive it via email upon successful completion of your donation.

    For reference, The SPSRF employer identification number (EIN) is 84-2291780.

  • How can I manage my monthly donation?

    If you created a monthly donation before November 12, 2022, you can update your contribution and access your donation history by visiting your Donation History page here.

    If you created a monthly donation November 12, 2022 or after, you can update your contribution and access your donation history by logging into your Kindful account.

“I set up automatic monthly donations to make a difference in an affordable, convenient way.”

- Rick Rios