The 2016 Austin, Texas Patient Connection was held August 20, 2016 with 20 people attending. It was a wonderful time for people to meet with others who have Hereditary Spastic Paraplegia (HSP) or Primary Lateral Sclerosis (PLS). We visited and shared information with each other. I hold an Austin Patient Connection each year as I know what it felt like to be the ONLY one you know who has a rare disorder. Meeting others with the same rare disorder helps in getting information and can change lives in the way lived. Three years ago at an Austin Patient Connection one of the attendees showed me a scooter she had, which I went and purchased online. This changed my life in being able to be more independent to do more and get things done faster.
~ Marlene Doolen
Giving Tuesday was a great start on our year end goal. So far we have raised over $46,000. 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 a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.