Liz definitely keeps us busy in spite of the challenges she faces every day, writes her father George Lepper. Spasticity, cramps and broken equipment seem to be an every-day occurrence. Liz goes to the Vocational Training Center three days a week, college two days a week, plays power wheelchair soccer every Monday afternoon, takes voice lessons on Wednesdays to work on retaining some form of voice communication as well as writing songs.
She presented one of her songs with the help of a fellow voice student at a music recital. She goes kayaking with the Cal Poly University Kinesiology department once every quarter. She loves going to to our local Renaissance Faire where the queen looks forward to seeing Liz and her friends all dressed up in their wheelchairs.
Although her speech is diminishing slightly she has her speech-device for a back up that allows her to communicate in classes, do social media, and has a computer that does everything from word processing to song writing.
“Liz is definitely an amazing young woman,” writes SPF Vice President Linda Gentner. “At the annual conference in LA, she demonstrated her wheelchair soccer skills. Every year we post her picture on our Walker By Proxy board — she’s definitely a Walker by Proxy extraordinaire.”
“If any of us ever feel sorry for ourselves, we just need to try to keep up with Liz. ”
Giving Tuesday was a great start on our year end goal. So far we have raised over $37,000. Our anonymous donor will match every donation dollar for dollar up to $175,000 until January 15, 2017. That's right, every donation you make will be doubled so you will receive twice as much satisfaction and double the number of people you will help with your wonderful and most appreciated generosity. This is 40% more than was matched last year so we are asking everyone to stretch your giving as well to make sure we use every nickel of this match. We can do it!
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors - CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know we can get to our goal if we all do our very best. We ask you to please join in our efforts by making a donation.