Make a Difference in the Fight to End Rare Disease

OUR GOAL:

I am excited to kick off fundraising for my 4th year participating in the Spastic Paraplegia Foundation's #HSPandPLS Run, Walk or Role 5k! Last year, we successfully raised over $5,000 for this event. I'm hoping to match or exceed that again this year!

Rare disease is defined as a medical condition that affects less than 200,000 in the US. For HSP, that number is even smaller at around 25,000 and PLS is closer to 2,000. Late last year, NIH awarded $8M to research for HSP over the next five years! Amazing research is happening toward therapies that could improve function and slow progression, but we have more work to do. With such small numbers of those impacted, these diseases are often forgotten or left unfunded, which is why grassroots fundraising is so critical to help fund research. There are families - adults and children - impacted by the daily struggles of rare disease. We all hope and pray for that miracle.

Please donate to support this cause for Spastic Paraplegia Foundation, Inc.

MY JOURNEY:

I suffer from Hereditary Spastic Paraparesis. I had never even heard of HSP before my diagnosis. With sudden onset in the spring of 2015 and confirmed through genetic testing in 2016, I was also diagnosed with secondary afflictions of hypothyroidism, acute onset high blood pressure and asthma. I'm happy to share that I have since balanced the high blood pressure and the asthma, which are no longer issues. This has been a journey like no other. For the past 11 years, I have experienced decreased feeling and function in my back, legs and hips. I struggle daily with balance issues and chronic pain and occasional falls. The simple task of walking now requires thought and effort. My genetic mutation is SPG5A; it is recessive and rare. In 2024, I had the opportunity to participate in two separate clinical studies that hopefully unlock knowledge that can lead toward therapies and a cure.

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 committed to walking and completing this 5K and continuing to fight for a cure!

SHUT UP LEGS ... WE GOT THIS!

What are HSP and PLS?

HSP and PLS are upper motor Neuron Diseases that are the result of degeneration of 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 the 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, the degeneration also occurs at higher regions in the spinal cord and brain steam, causing weakness and spasticity in the arms, slurred speech and difficulty swallowing.

SPF prides itself on being a fully volunteer-run organization and 93.3% of the donations are used to fund research for a cure!

SP-Foundation.org