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).
Giving Tuesday, the first Tuesday after Thanksgiving, is December 3rd of this year. It comes after Black Friday and Cyber Monday and has been an ever growing favorite time of the year for charity giving. Last year, over $380 Million Dollars was raised for charities nationwide on Giving Tuesday, that were comprised of 3.6 million gifts, the average being $105.55. Facebook alone raised $120 million last year so that means they were about 31% of the total.
Our Giving Tuesday donations for the past 3 years were $9,237.05 in 2016, $18,800.00 in 2017 and $49,833.00 in 2018. We need to maintain this growth because it means so much to our mission of discovering a cure or treatment for both HSP and PLS. You will hear more on our Facebook page and email blasts. Please don't be shy! Be sure to let your friends and family be a part of this wonderful cause!
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.
