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Ambassador Volunteer Information

Ambassador Volunteer Job Description

Over the 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 Ambassadors.

  • Ambassadors raise awareness about our disorders as well as enhance community building and industry relationships. You can assist with media relations, share your story, speak at local groups, or help with grassroots advocacy.  

If you decide to become an Ambassador contact us

Here’s how the program works:

Your Role as an Ambassador

  • 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 Board of Directors by emailing the question to
  • Ambassadors will receive information of new people in their area who join our community and send out "Welcome" emails to them. Depending upon the area, 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

​​​​​​Criteria 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.

How to reach out to members in your state/region

Click Here for an Excel file of the members in your region. The Excel spreadsheet has the contact information for people in their state known to have HSP, SP, or PLS. The number of people will range from a few to many and the information will range from just names, phone number, and email addresses to full mailing addresses.

Then use the sample welcome letter found under 'Helpful Information for Ambassadors' below to send an email to the members in your state!

What to expect as an Ambassador

  • Be a listener! Give suggestions and know who to contact for different requests. Be well versed in the SPF website. Visit it often to see what's new.

  • Be a liaison! Know whom to contact. And make sure to follow-up!

  • Be a conduit! Especially newly diagnosed people don’t know where to begin or what to ask. “Where do I start?”

  • Be an example! (Practice what you preach!) If you are recommending stretching or other forms of exercise, make sure you are doing it too.

  • Send out periodic emails. However often—you decide. Be excited! Send pictures and short videos. Share what’s happening with you.

  • Update your contact information at least once a year. Let SPF know of a change. It costs money, in returned postage, that could be spent on research.

  • Hold periodic group meetings. This can be formal (a connection with an agenda or speaker) or informal (a simple “let’s meet for coffee!”) as you like!

  • Participate in the monthly SPF Education Committee and Ambassador Meetings, held on the third Wednesdays of the month, from 7:00-9:00PM CST via Zoom.

  • Send a monthly email to members in your region with high level updates from the monthly education committee and ambassador meeting.

  • Stay connected to members in your region as a liaison and support member giving them info they may need to feel connected in the community.


Helpful Information for Ambassadors

Resources on the SPF Website

Our Impact since our inception...

  • Dollars Raised

    Over 12,000,000 dollars for research!

Thank you to our generous sponsors.