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).
GREAT NEWS!! We finished 2019, having raised a total of $870,706.64 compared to our 2018 year end of $658,627.43. That is a difference of $212,079.21 or 32%.
Our year end match-my-gift fund-raiser raised $325,142.88 com-pared $287,293.87 last year. Our anonymous donor matched all gifts up to $150,000.00 last year and raised that to $200,000.00 this year. After his or her match, we raised 20% more on our year end fundraiser than we did last year. All these numbers are wonderful and we can't thank you enough.
Remember, our world renowned all-volunteer Scientific Advisory Board will carefully study and rank the several dozen scientific proposals we have received from all over the world. They will help us support only the very best proposals that they rate as Excel-lent and Very Promising (EVP). We have never had the opportunity to support as many of these EVP proposals as we will this year, with your help.
Every year, we make great prog-ress in getting ever closer to that cure. This could be the year that a great breakthrough happens. Thank you again for your kind generosity!
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.
