March 2006

The PND Association is proud
to present our new website.
Please check out all of the
new features and make
sure you register.

 First Annual Symposium on
 Pediatric Neurotransmitter
 Diseases May 18 to 19, 2002
 Annals of Neurology
 Vol 54 Supplement 6 2003
 For a free copy of the Journal
 [email protected] 

Run for SSADH Raised

LIAM, my nephew, was diagnosed with SSADH earlier this year at nine months old.  He maybe one of the youngest children ever diagnosed with this disorder, which gives him the advantage of early intervention.  Over the last few months he has received intensive therapy to help strengthen his muscles and stimulate interaction.  His progress has been remarkable and his situation is of great interest to Dr. Philip Pearl, a clinical expert for SSADH deficiency patients.  Since Liam was diagnosed so young, he is being monitored on a regular basis. 

Liam is a sweet little boy and my brother and his wife have been incredibly committed to his treatment and therapy.  They are also currently involved in research studies for SSADH. Liam celebrated his first birthday on September 15th.  In honor of Liam's birthday, I ran the Marine Corps Marathon on October 30th to help raise money for the Pediatric Neurotransmitter (PND) Association.

 It was perfect weather the day of the marathon with temps in the high 50s to low 60s. We started in the second heat of runners at about 8:45 AM. There were so many runners that for the first mile it was difficult to set a pace or stay with each other. The first mile was also uphill which was a little disconcerting since we had heard the course was flat.  By about mile three the crowd had thinned out some and the course was flatter.  But the entire race was pretty crowded, probably because we were right in the middle of the pack.  I felt great all the way through to the 13 mile mark and there was plenty of people cheering us on (we had written our names on the front of our shirts and PND Assoc. on the back) - so everyone knew our names.  It started to get more difficult around the 19 to 20 mile mark as the spectators were few and far between and I started to feel more fatigued.  We had pretty much run the entire time except for short walk breaks at the water stops. But it wasn't until mile 23 when I really hit the wall, then I knew I couldn't stop or I would never start again. Just about everything hurt and it was all about sucking it up for three more miles.  The last mile was the longest mile I've ever run.  The last quarter mile to the finish was all up hill!  However I picked up the pace and finished in 4 hours and 42 minutes, which was better than the 5 hours I was shooting for.  It was a great experience, and seeing Liam at the finish line made it even better!

Thanks to all may family and friends that helped make this run a huge success!

Sarah St. Jean