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 firstname.lastname@example.org
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.
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
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.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.