Ambassador Volunteer Job Description

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:

Establish the network and locations of people
  • 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.

Execute the program
  • 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

  • Please maintain respect for everyone with HSP or PLS in your area at all times, hold the Spastic Paraplegia Foundation in high regard and follow the guidelines presented by the Board of Directors.
  • PLS and HSP must both be represented equally at all times.
  • If you are asked any questions by your membership group that you are not confident in answering, please direct them to The The Board of Directors by emailing the question to
Criterion for Ambassadors
  • 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.

Helpful Information for Ambassadors