SPSRF Newsletter November 2021 It’s not a trophy but it sure feels like one! The Chan Zuckerberg Initiative selected 20 patient-driven rare disease groups to receive a grant to boost networking, organizational, and funding opportunities. 🎥 Please watch this message and let us know the next steps you’d like to see from The SPSRF. “Focus…
SPSRF Newsletter September 2021 It’s rare that an article rocks me but this one did. Here’s a powerful recap, written by @TheAddictsDiary: “During a BRUTAL study at Harvard in the 1950s, Dr. Curt Richter placed rats in a pool of water to test how long they could tread water. On average they’d give up and…
SPSRF Newsletter July/August 2021 Thanks to all who supported our PowerTrain Fundraiser last month! The workout was great. The instructors at Power Train were awesome. I got to heckle people and cheer them on. They even gave me a megaphone! And I spent time with my friends after the event. Priceless. Many of you may…
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…