Join us in helping find relief from Rare Diseases HSP and PLS

I'm excited to kick off fundraising for my 4th Annual SPF 5K Fundraiser for the Spastic Paraplegia Foundation. I'm hoping to match or exceed our 2024 result of over $12,000 raised.
Please consider a donation to support this cause, and help me to meet or exceed my goal to support the Spastic Paraplegia Foundation. We are very proud to support an almost fully volunteer organization where over 93% of all donations are used to fund research to find a cure/symptom relief for those of us with Hereditary Spastic Paraplegia and Primary Lateral Sclerosis.
What are HSP and PLS?
HSP and PLS are diseases caused by degeneration of the upper motor neurons. “Upper motor neurons” are the nerve cells that control voluntary movement. They are located in the motor cortex of the brain and carry messages from the brain to the brain stem and spinal cord. They connect to other nerves called “lower motor neurons”, which carry the messages out to the muscles to tell them to move.
When there is degeneration in the upper motor neurons, messages (impulses) cannot effectively reach the lower motor neurons and their messages to the corresponding muscles are impaired. This causes the muscles to be weak and muscle tone to be increased, resulting in stiffness or spasticity.
In both HSP and PLS, nerve degeneration occurs in the lower part of the spinal cord, resulting in weakness and spasticity in the lower body. In PLS, degeneration also occurs at higher regions in the spinal cord and brainstem, causing weakness and spasticity in the arms, slurred speech and difficulty swallowing.
A bit about me:
Most everyone knows I walk funny, and that is because I suffer from Hereditary Spastic Paraplegia. During my last years working at AT&T, I had a few friends ask me if my leg hurt, as I was walking oddly. Nothing hurt and I just ambled along. A new doctor in Fl in 2016 suggested I see a Neurologist and he felt it was HSP. After genetic testing it was determined that I have one of over 80 variations of HSP, mine is the most common, SPG4. And it all started making sense, my Dad had what he thought was a golfing injury and progressed from cane to crutches to rollator to wheelchair, and my brother has difficulties like me. Luckily after genetic testing and diagnosis, my Neurologist at MGH referred me to the Spastic Paraplegia Foundation and we have been a part of it ever since, involvement growing each year. But, unfortunately my HSP is progressing each year. I do struggle daily with balance issues and have recently started dealing with sciatic nerve issues and arthritis in lower spine and knees. With HSP the simple task of walking now requires thought and effort. But, I’m the eternal optimist, and I stay focused on the positives and incremental wins gained through regular exercise to keep function and mobility stable, gaining strength through exercise and movement. I'm able to do this with the loving support of my family and friends. I am not able to make a full 5K walking, and haven’t in a while, but I'm doing 5K's on the recumbent bike and walking 5K is my goal as I’m learning to manage the back and knee issues. HSP may be a part of my life, but it doesn’t define me. Instead, it fuels my mission to spread awareness, push for research, and support those who are still searching for answers of their own.

Help us reach or exceed or 2025 Goal of $12,000. There is so much underway – a survey of over 800 HSP/PLS patients all over the world and an upcoming Annual Conference in Washington, DC with so many physicians, scientists, pharma, the NIH and FDA attending – we (SPF) are being seen and respected. Every donation will go a long way to helping me meet my goal for Spastic Paraplegia Foundation, Inc and the Foundation reach its goals to find treatments and ultimately a cure.

With our thanks and love to all,

Sue and Ed

PS if you'd prefer to mail a check, the Foundation the address is:

SPASTIC PARAPLEGIA FOUNDATION
6952 Clayborne Drive
O’Fallon, MO 63368-6202

Just note the Duffy 5K on your check, or you can always send your check to me and I'll get it right to them.