Stiff Person Syndrome Association

Message from the Director 

 

        Welcome to the Stiff Person Syndrome Association, the world wide group formed by passionate individuals who no longer want to be invisible. The SPSA was founded by people who suffer from this chronic illness, their families, friends and caregivers.

 

        I am one of the founders who was diagnosed on July 12, 2001, with SPS.  I could not comprehend the episodes of spasms that occurred in twenty-four hours a month prior. Here I was, a thirty-seven year old male, who became one of six hundred people in the United States diagnosed with Stiff Person Syndrome.   What was I to do? Stiff Person Syndrome primarily affects individuals in their 3rd to 5th decades of life, although we now know it also affects infants and children.  I have been determined to address the statistics head on — as have others who have been afflicted with this disabling illness.

 

          The SPSA exists to provide support for all of those whose lives are touched by Stiff Person Syndrome. Our goals also include increasing public awareness as well as raising funds for SPS research by utilizing the resources and talents of our world wide members. 

 

   We  welcome  you  and  invite you to join  us in  our mission                                        

SPS MATTERS! 

         

 

Keep moving forward any way you  can!

My Trusty Companion “GiGi”

Gets Me Out Every Day, and Isn’t a

GasGuzzler !  Ainslee Edwards

Assistant Director SPSA

 

 

 

 

 

SPSA  Matters ! 

Online For Global Awareness

Director, Mike West

Former Accountant

Founder SPSA

 
Text Box: Membership Forms Are Available Now ! Just send an e-mail to Info@spsaonline.net You can pay for your membership by email using PayPal for your convenience. Simply check the PayPal box on your Membership Form Or… pay for your membership by snail mail (USPS) by mailing to this address Membership Forms SPSA Asst. Director P O Box 40853 New Bedford, MA 02744

Be sure to send in your membership to help us keep offering assistance to other SPSers providing outreach, awareness, research and support.  Check our Inventory of awareness items often. We will be adding items soon.  All articles offered for sale on SPSA are designed or manufactured by SPSers.  All proceeds go to our awareness campaigns and research. Thank you……..
Text Box: We Are Still Under Construction Pardon our appearance...we are new at this and we are still setting up our web site... but we wanted to give you a preview of what’s to come. We hope you will return and check our progress & Invite others to join us. WWW.SPSAonline.net

We will be adding chats and blogging pages soon.

 

Please check  back !

 

In the meantime ~ check in to our Facebook Page….

 

Search “Stiff Person Syndrome” and find a great group of bloggers.

Text Box: NORD the National Organization for Rare Diseases Holds Rare Disease Day Feb 28,2010 See Calendar Page for details !