Help Susan Walk Again

Five years ago I began to search for the reason my left leg lagged when I ran.  I walked 2 miles on my lunch break, everyday, year round in every kind of Minnesota weather. I participated in a core power yoga class twice a week for 15 years. Less regularly, I biked, swam, lifted weights and did high intensity interval training. Family vacations were hiking,canoeing, scuba diving, and sea kayaking.  

All of that is gone now. Despite receiving current standard of care treatments, my disease continues to progress, robbing me of balance and coordination. I am unable to walk without assistance, do yoga beyond a few of the stretches and breathing exercises, or pick up my granddaughter and carry her to a chair.  I can no longer work in the scientific laboratory. 

I'm trying to get in Northwestern University’s clinical treatment study for SPS (Stiff Person Syndrome). The study costs $125K, cash up front. 

The Northwestern autologous stem cell transplant was successful in treating Multiple Sclerosis, and offers some hope of cure for other autoimmune diseases, including SPS. The study coordinator reports that they have transplanted 20 patients over the past 4 years , with a success rate of about 75%.

SPS is a rare disease, with an incidence of about 1 in 1 million.  I know of no other past or current controlled clinical treatment trials of any kind for this disease.

The trial closes in 2019. 

Susan


We recognize some people are concerned about the fees charged by GoFundMe. You can donate through pay pal (and ensure all money goes directly to susan) by going to:  Susan's Paypal donation page 

You can also follow her updates on caringbridge.