Joy Lwangu - her SPS was undiagnosed for 15 years.

Amplifying the Rare Voice

SPSRF Newsletter May 2021 Here it is in print! For those who missed it, we were featured on the front page in the Washington Post. Yay! We’ve been getting comments from people all over the world offering support and sharing similar struggles. The response has been enormous and the connections priceless. RESEARCH UPDATE: This extraordinary…

The SPSRF wishes you ✨hope✨

National Month of ✨Hope✨

SPSRF Newsletter April 2021 April was designated as National Month of Hope in 2018 by nonprofit Mothers in Crisis to convey the importance of hope around the world.  I used to think “hope” was wishful thinking. That changed after I watched “Jimmy Kimmel & Ady Barkan in Conversation” on YouTube last week. Ady speaks of…

Tara and Meg - Kicking for SPS Awareness, Research

#KickingSPS

SPSRF Newsletter February 2021 I can’t believe it’s the end of February! We have been rockin’ and rollin’ and we’re about to get kickin’. For Rare Disease Day, February 28th, The National Organization for Rare Disorders (NORD) published my story about surviving this crazy condition that uprooted my life! Hopefully this information can help you or anyone…

Tara and Baxter are doing the #547Challenge. It's not too late for you to join in!

Today’s the day!

SPSRF Newsletter December 2020 Today’s the day! Shane takes off on his grueling 547-mile trek criss-crossing Tasmania to raise awareness and funds for SPS! We are halfway to our year-end goal of $113,600. This funding is necessary for the research at Johns Hopkins to identify the biomarkers for SPS which is crucial in understanding the…

Traversing Tassie: Running to Shine a Light on Stiff Person Syndrome

Announcing TTX2

SPSRF Newsletter November 2020 Here we are: November 2020! What an amazing month we have had! I was at Johns Hopkins for my monthly visit, second one in person. Yay! Met one of the new researchers and of course my neurologist whom I always love seeing. It was great to talk about the research that…

Jacqui Atkinson with her book One in a Million

One in a Million

SPSRF Newsletter October 2020 “This has been an exciting, surprisingly emotional day. Two hours ago I was at the bank opening an account for my nonprofit foundation…” That was my Facebook post dated December 5th, 2019 announcing the birth of The Stiff Person Syndrome Research Foundation. It is astounding how far we’ve come since then,…