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…

Participants in the #547 Challenge

What a Difference a Year Makes!

One year ago, when I formed this foundation to fund critical research needed to discover better treatments and a cure, I didn’t realize how energizing, exhausting, endearing, and awe-inspiring this year would be. I am forever grateful to all of you for joining me on this journey.As we wrap up the year — the most…