My SPS Story: Steven S.
Describe your life at your healthiest point. My work as an inventory control and purchasing manager and now a data analyst was rewarding and fulfilling,…
September 2022 – “We have become closer through this,” The SPSRF founder Tara Zier tells “Dadvocate” Adam Johnson in this Parents as Rare podcast, an unvarnished look at life as a rare disease patient.
March 2022 – A thoughtful interview about invisible disabilities that we hope will help the next person get a proper diagnosis, find good doctors, and discover new purpose. Many thanks to Jess Stainbrook, Invisible Disabilities Association for shining a spotlight on SPS.
January 2021 – Southern Cross TV covers the penultimate day of Traversing Tassie, ultra-runner Shane James’ epic 880km run to raise awareness and funds for The Stiff Person Syndrome Research Foundation.
December 2020 – Voice of America covers Shane James’ and Tara Zier’s partnership to create Traversing Tassie and raise awareness of Stiff Person Syndrome worldwide.
October 2020 – The Advocate of Australia wrote the first story about Shane James’ historic race, Traversing Tassie, and his plan to donate all proceeds to The SPSRF.
April 2020 – Interview on Facebook Live announcing the launch of The Stiff Person Syndrome Research Foundation website, www.stiffperson.org
May 2018 – ABC7 in Washington, DC interviewed Tara and her neurologist at Johns Hopkins about the role trauma plays in triggering auto-immune disease.
Describe your life at your healthiest point. My work as an inventory control and purchasing manager and now a data analyst was rewarding and fulfilling,…
SPSRF Newsletter September 2022 It is not easy to watch the video from our featured patient this month. The pain there is undeniable. I connected…
I’ve worked in the nonprofit sector for over 20 years, and many of those years have proudly been under the umbrella of Fundraising. I absolutely…
SPSRF Newsletter July 2022 I am so proud to announce the formation of The SPSRF Medical Advisory Board, consisting of three of the top SPS…