Dear Friends at the Spastic Paraplegia Foundation,
As the retired founder and Past-President of NORD, I want to let you know that my new book, "Orphan Drugs: A Global Crusade", has been published. The electronic version of the book can be downloaded at no cost from my web site, www.abbeysmeyers.com , and the printed soft-cover book is available on Amazon.
The reason I wrote this book was to show that individuals alone did not have the political power to solve this economic, medical and political problem, but by working together rare disease patients represent millions of people who can be a formidable political force. The accomplishments of the patient-led rare disease charities in the USA have served as a model for the rest of the industrialized world. Noting the success of the American Orphan Drug Act, many industrialized countries have implemented their own orphan drug legislation, and together orphan disease advocacy organizations have become a “Global Crusade” for people with rare "orphan diseases".
This clearly illustrates the importance of the patient community working together for the benefit of all. I wish all of you at The Spastic Paraplegia Foundation all the best.
Abbey S. Meyers
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.