Here are some resources. They may be helpful to you!
In terms of legal issues, information about GINA may also be of interest, which protects Americans from discrimination based on their genetic information in both health insurance (Title I) and employment (Title II).
It can often times seem dishear-tening for people with rare dis-eases, especially when they are genetic, to think about what legacy they will be leaving. Whether we have spiritual beliefs or not, we may wonder why we were given such a challenge in our lives. Per-haps "challenge" is the key word. Do we let this disability conquer us or are we going to do our very best to conquer it? We, at the Spastic Paraplegia Foundation, have a mission to cure both Hereditary Spastic Paraplegia and Primary Lateral Sclerosis. We do so by supporting the very best, state of the art, find-a-cure research on this planet by working closely with our Scientific Advisory Board and the very best neurologi-cal scientists in the world. We hope you will consider The Spastic Paraplegia Foundation in your Last Will and Testament and in your overall Financial Plan?
When Clinical Trials begin in 2019 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.
87 cents of every dollar you donate goes into our mission of research and service. 7 cents goes to fundraising and 6 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.
