Your friends and family really care about you. They want to help you and are looking for a way. You can give them that chance. The only reason that they haven't given to helping us find a cure is that they have not been asked. Here is an example of a letter you might write this Fall to your friends and family:
Dear their name,
You probably already know this but I have a rare upper motor neurological disorder called __________ (either Hereditary Spastic Paraplegia or Primary Lateral Sclerosis). This disease is defined in the dictionary as being "characterized by insidiously progressive lower extremity weakness and spasticity."
Oh, but there is hope for a cure. The Spastic Paraplegia Foundation was founded in 2002 and they have made amazing progress working toward a cure. In the past 13 years they have funded almost 5 million dollars worth of research. In the past year alone, there was a scientific paper published about either HSP or PLS (very closely related conditions) every 3 days. Science has progressed to the point where actual clinical trials of real treatments for real people like me will be unfolding early next year.
I am writing in the hopes that you might want to share in helping that hope come to fruition. Instead of a Birthday or Christmas present this year, I am hoping that you will consider making a tax deductible donation to The Spastic Paraplegia Foundation. You can do so by either going to their website: sp-foundation.org and clicking on the DONATE button or simply sending a check to:
The Spastic Paraplegia Foundation
1605 Goularte Place
Fremont CA 94539-7241
Just mark in the memo section of the website or on your check that you are giving in my honor so I can be sure to send you a thank you note. Over 90 cents of every dollar donated to SPF goes directly to state of the art research.
Thank you so much for considering this idea.
Editing tip: If they don't normally give to you for Christmas or Birthday, you might eliminate the words: "Instead of a Birthday or Christmas present" and capitalize the following word: "This"
DON'T MISS OUT! Come hear the very latest about what is known about and what hope we have for a cure for HSP and PLS. Also, you will love meeting and learning from over one hundred other people with these conditions. Make friends, learn from others about how to cope, the best tools and just have a great time.
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 a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.