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
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
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.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.