We couldn’t have asked for a more perfect day and, as in prior years, a few new people joined us.
Our Friday night dinner and “Share and Compare” discussion time (with dessert after dinner) was particularly inspiring. Kay Brady was so excited to share with the group, and her doctor gave her the okay to join us since her surgery was very recent. What she shared:
“These are the surgeries I had:
1. An Achilles tendon advancement. This is also known as a Murphy Procedure.
2. A tibialis anterior tendon transfer.
3. A flexor tenotomy.
When looking for a surgeon I would recommend finding a surgeon who is board certified in Reconstructive Rearfoot/Ankle Surgery.
I no longer am pigeon toed and my toes lie flat”.
Jean Chambers shared about a special plastic to adhere to shoes to prevent wearing out so fast. She handed out samples to those who needed it. She said it needed to be done by a shoe cobbler. If you want more info, contact Jean directly.
Our yummy Friday night desserts: chocolate cake with our logo, chocolate candy with our logo and chocolate dipped strawberries (who said we liked chocolate – purely medicinal). There were 21 of us for dinner Friday night which included family – 8 with PLS and 3 with HSP. No where other than at our Connection do the PLSers out number the HSPers.
Saturday was another great TeamWalk – a couple of us represented our friends who were Walkers or Rollers by Proxy. I was proud to wear a name tag for Dave Irvine, our SPF WA State Ambassador. We also had another good year of raffle and silent auction items. Our weekend was a great financial success too for research — $34,500 and counting. Many thanks to our lead sponsor, Brocchini Farms. Kris had 8 of her sorority sisters in attendance and they buy lots of raffle tickets and bid on silent auction items!! Love those ladies!
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.