Rare Disease Day 2025 - SPS & PERM

In the spirit of the age-old adage, "It takes a village," I invite you to join a special fundraising opportunity that I hold very close to my heart.

My name is Sue Roseworn, and my team will be walking 300,000 steps by February 28th, 2025, in honor of Rare Disease Day. This is not just a walk; it is a personal journey and a milestone that means so much to me.

Please take a moment to read my story and understand why this cause is so close to my heart. Every step I take represents the challenges, the hope, and the strength that individuals with rare diseases carry every day.

I need your support! Your donation will not only help fund research but will also raise vital awareness for those who often feel invisible in the healthcare system. Together, we can make a difference.

SPS- PERM

“Stiff-person syndrome is a spectrum of disorders whose most severe form is associated with uncontrollable muscular rigidity and spasms that can be caused by an autoimmune response.”

Sue’s Story

10 years ago I was diagnosed with SPS - PERM (SPS - Stiff Person Syndrome; PERM – Progressive Encephalomyelitis with Rigidity and Myoclonus); SPS is an extremely rare autoimmune disorder with the addition of the PERM, form a crippling disease that is uncommon and seldom understood by the medical field and society. Understanding and managing the minefield of this diagnosis has been at times very overwhelming.

This is a disease that has targeted my Central Nervous System and has hindered my life in ways unimaginable.

SPS-PERM is unrelenting and intrusive in my life with the ongoing medical examinations and procedures. To assist with the pain and to support my body to fight this disease, I undertake fortnightly infusions that I will require to continue for the rest of my life as well as daily medication to enable me to live a functional life.

Daily activities that I once took for granted have now become challenges that I must face. A body that I once controlled, now controls me and all I attempt to do. A body that unexpectedly goes into spasms causing mind-numbing pain has now become a part of my daily life. There are days when I question whether I can achieve my life goals, perform my job to the best of my ability, and avoid letting down my family, friends, and people around me. I struggle with fear and the unknown of every minute of my life, with how quickly a good day can turn into a debilitating week.

There are times I feel I can no longer fight; I am drained, and it is these times when I am reminded of the incredible love and support that I have and continue to receive from my husband, my family and close friends. Their support has been what has given me the strength to know I am not alone and that I can face any obstacle this disease will throw at me – I will not let it win!

I encourage all of you to share this with your family, friends and colleagues. SPS-PERM is a very rare disease and EVERY donation made will support the continued research into this disease so that those suffering every day can THRIVE rather than just SURVIVE.

I have included a link below for you if you are interested in reading more about this disease.

https://www.thetinman.org/spsperm.html

Please give what you can, together we stand strong!