It is not easy to watch the video from our featured patient this month. The pain there is undeniable. I connected immediately with Lea’s struggle of being medically mismanaged for years. I could hear my voice in hers as she spoke. It reinforces why we do what we do. I don’t want people to suffer like this. To be treated so poorly. To be told it’s in your head when you know you’re sick.
Lea is a young woman, living in West Africa, newly diagnosed with a disease with a very strange name. She Googles it. Not only does she find The SPSRF, she finds her next neurologist in Baltimore, she connects with our medical volunteer, and she links up with another young patient with SPS to whom she relates.
The SPSRF is dedicated to building connections, and none more important than a Patient Contact Registry. Connecting with and engaging our community of patients in this initiative will be invaluable to drive research.
The power of connections is priceless. It gives people hope. It combats loneliness. It brings people together to support a cause. It is through connections we will find a cure.
Ignite Study for SPS Patients
Patient Contact Registry/Natural History Study
Three things stand out about Lea’s story. First, she scoured the world to find a diagnosis and treatment. Second, her extensive personal videos of SPS spasms capture authentic moments of acute pain. Finally, and most profoundly for The SPSRF, Lea found life-changing resources on our website. 🎥 Watch her story here.
FRIENDraising with Cam
Peep the superstars below who hosted fundraisers for The SPSRF on Facebook this month. Thank you madly and deeply to them, and to all of you who supported them! We are in this together. Start your own fundraiser today by clicking “Raise Money” when you create a Facebook post, then selecting The Stiff Person Syndrome Research Foundation 🤗