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
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.