SPSRF Newsletter June 2021 How many times have you walked away from a doctor’s appointment thinking, that was not helpful. Whether you have a rare disease or are the epitome of health, I can’t stress enough the importance of having a superstar primary care doctor to quarterback your health care. For those who read the…
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…
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…
SPSRF Newsletter March 2021 March 15 is International Stiff Person Syndrome Awareness Day, and awareness is mission #1! It takes on average 7 years to diagnose SPS. By that time many are completely disabled. There are no good treatments for SPS. I’ve tried multiple medications to deal with debilitating muscle spasms including, Lyrica, baclofen, Klonopin,…
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…
SPSRF Newsletter January 2021 Welcome 2021! Thanks for hanging in there with all of the emails in December. I know it was a lot! There was a ton of focus on this Australian guy Shane and his run which we called TTX2. I got great feedback which I always encourage, good or bad. Many said…
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…
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…
When we were planning Traversing Tassie, Shane sent over his ideas for a route and we at The SPSRF loved how the email below is the perfect expression of his kinetic energy and love of life, both of which propel him through this terrible disease of Stiff Person Syndrome (SPS). Marathoners with SPS are few…
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…