Make a Difference in the Fight to End Rare Disease

Join me in supporting the Spastic Paraplegia Foundation Annual Run, Walk or Roll 5K event to help raise awareness for #HSPandPLS, find treatments, therapies and a cure for those affected with Hereditary Spastic Paraplegia and Primary Lateral Sclerosis.

What are HSP and PLS?

HSP and PLS are upper motor neuron diseases that are the result of degeneration of the upper motor neurons. Upper motor neurons are the nerve cells that control voluntary movement. They are in the motor cortex of the brain and carry messages from the brain to the brain stem and spinal cord. They connect to lower motor neurons carrying messages to muscles to guide movement.

When there is degeneration in the upper motor neurons, messages cannot effectively reach lower motor neurons and their messages to 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.

Our Goal:

I am excited to kick off fundraising for my 2^nd year participating in the Spastic Paraplegia Foundation's #HSPandPLS Run, Walk or Roll 5k! Last year, we successfully raised over $5,000 for this event! I’m hoping to match that again this year!

Please consider a donation to support this cause, to help me meet or exceed my goal for Spastic Paraplegia Foundation, Inc. SPF prides itself on being a fully volunteer-run foundation and 97% of all donations are used to fund research for a cure.

SP-Foundation.org

My Journey:

I suffer from Hereditary Spastic Paraparesis. I had never even heard of HSP before my diagnosis. With sudden onset in 2015 and confirmed diagnosis in 2016, I was also diagnosed with secondary afflictions of hypothyroidism, acute onset high blood pressure and Asthma. This has been a journey like no other. For the past 9 years, I have experienced decreased feeling and function in my back, legs and hips. I struggle daily with balance issues and chronic pain. This simple task of walking now requires thought and effort. My genetic mutation is SPG5A; it is recessive and rare. This year, I have been privileged and blessed to participate in two separate clinical studies that hopefully unlock knowledge that can lead toward therapies or more.

I stay focused on the positives and the 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 committed to walking and completing this 5K and continuing to fight for a cure!

My mantra - SHUT UP LEGS ... WE GOT THIS!