Over the past ten years, we have seen the birth and development of HSP, SP, and PLS online patient communities. Individuals from around the world are helping one another every day, offering critical support and information services via the internet. Now, we’d like to bring that networking, support and help a little closer home through the help of volunteer SPF State Ambassadors.
Here’s how the program works:
Ambassadors will receive an Excel spreadsheet of contact information for people in their state known to have HSP, SP, or PLS. The number of people will range from a few to 150 and the information will range from just names and emails to full mailing addresses.
The spreadsheet will indicate the counties that individuals reside in, so that Ambassadors can ascertain the general locations of people.
Ambassadors will receive information of new people in their states who join our community and send out Welcome emails to them. Depending upon the state, this may be 1-12 people over the course of a year.
Let people who live within reasonable proximity to one another know they are "neighbors" and encourage them to meet.
Send out periodic emails as needed to maintain the regional network.
Hold periodic group support meetings or more formal events
Try to get current contact information if the information provided on the original spreadsheet is incorrect. Report updated information to SPF database coordinators at email@example.com
Have an SPF disorder (HSP, SP, or PLS) or are related to someone who does.
Are people who seek to enhance the quality of life for individuals and bring energy and commitment to the program.
Are comfortable with email, internet searches and Excel and Word applications.
Can make a commitment of one year.
Will respect and maintain the confidentiality of our members and not share personal information outside of SPF initiatives. Additionally, Ambassadors will respect the desire of individuals who do not want any further contact.
In 2015 almost a dozen HSP Patient Advocacy Organizations from all over the world met in Madrid Spain to join forces to establish an international connection and resource to make sure a first rate, well established and impeccable HSP Patient Registry is set up. This will allow our next Clinical Trials to go forward smoothly and effectively. Good communication channels have also been established so as to allow for a smooth flow of information among scientists and organizations such as The Spastic Paraplegia Foundation.
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.