PARENTS AS RARE – EPISODE 065
Tara Zier – Stiff Person Syndrome Research Foundation and Finding Your Purpose
Tara Zier is a rare disease patient, mother and the Founder and President of The Stiff Person Syndrome Research Foundation, where the vision is that all people with Stiff Person Syndrome (SPS) receive a prompt diagnosis, compassionate care, effective treatments and a cure. The mission is to raise awareness of SPS, to support research for better treatments and a cure for SPS while strengthening the community through education and collaboration.
Can you share your rare disease story?
I came into the rare disease space because I have a rare disease called Stiff Person Syndrome (SPS), which is a rare neurological disease with autoimmune features. I was diagnosed in 2017 after a three year long diagnostic odyssey, going from doctor to doctor and receiving misdiagnosis.
What was it like to get your diagnosis?
I was relieved to have an answer. There was a lot of pressure and anxiety around parenting my children and protecting them from trauma as I went through the diagnostic odyssey, so there was also relief from that. I moved into the education phase to learn about the disease and determine a comprehensive approach to healing and getting better, despite SPS being a progressive disease.
How has your SPS diagnosis impacted your kids?
My kids have a good recollection of what I was like before my diagnosis, so it was hard for me knowing they were witnessing the changes. We became closer through my diagnosis in a lot of ways and I’m honest with them about the unknowns so we can be grateful for each day.
How did you communicate your diagnosis with your children?
I relied on therapists to guide me on what to say and how to say it. I had to decide how much information to give them because the disease is a spectrum condition with different levels of disability. I had to be transparent about not knowing what the future looked like. I let them know that they could research, but that I preferred we do it together so we could talk about it.
Can you share what The Stiff Person Syndrome Research Foundation is doing right now?
We were fortunate to get the Chan Zuckerberg Rare As One grant, which offers three years of funding for organizational capacity for sustainability and networking. They also offer training and support across all facets of running a rare disease nonprofit. Since we’ve received the grant, we’ve expanded our board, brought on three members for our medical advisory board- all experts in SPS. We’re currently in the process of developing our patient contact registry natural history studies.