Stiff Person Syndrome: If You're Not Dancing, Something's Wrong

$23,945
9%
Raised toward our $250,000 Goal
22 Donors
69
days left
Project ends on December 31, at 12:00 AM EST
Project Owners
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Support Johns Hopkins Stiff Person Syndrome Center and Dr. Scott Newsome

My name is Lea Jabre, I suffer from a very rare condition that affects one or two people per million called Stiff Person Syndrome (SPS). SPS has robbed me of living – or so I thought.

December 3rd is World Disability Day.

How could I forget the day I stopped being able to go down stairs unaided? What was even more gut-wrenching was realizing I would never go down stairs unassisted for the rest of my life. That day, I understood I had never allowed myself to live in the present my whole life.

Time… what is time? I often asked myself that growing up. It’s a concept taken for granted when you’re young and life ahead seems eternal. 

Then one day, time suddenly stops. Instead of dwelling on its meaning, you ask: how much time is left? The present? If that is the answer, then living in the present requires being grounded in the moment. It took me a while to understand the difference between being stuck in the past and being shaped by it to become who I am. Then comes the question: how do you deal with the future—thoughts filled with uncertainties? Living in the present, one day at a time, is a lesson I learned through my various chronic diseases diagnosed over the years. 

Suffering from Stiff Person Syndrome, made me understand that to survive, I had to live a day, an hour, a minute—and sometimes even a second—at a time. I had to learn to live in the moment in order to face the disease and my new reality.

I was given a third chance at life in February, 2025... I know, I am a miracle and life wants me here.

I have chosen to serve as a patient advocate to give people hope and therefore decided to raise funds for the Johns Hopkins Stiff Person Syndrome Center, led by Dr. Scott Newsome. Donations will directly support a project aimed at improving diagnosis and outcomes in SPS, by identifying early predictors of disability, evaluating key diagnostic markers, and refining criteria to reduce misdiagnosis.

Will you join me?

I invite you to make your tax-deductible gift to support novel biomarker discovery research projects securely through this online portal, or contact Gina Scalise, Sr. Associate Director of Development, for assistance with other philanthropic vehicles (donor advised fund, gift of securities, etc...) or to learn more.  Gina can be reached via email at gscalis1@jhmi.edu. Thank you for your consideration, I am grateful.

Gratefully,

Lea