Ojai Valley News Blog

Sept. 19 event organized to help 14-month-old fight rare disorder

By Nancy Gross
“When he wants attention, he rolls his eyes. He’ll blink for yes,” says Nikki Clark of her 14-month-old nephew, Micah Marshall, who has spinal muscular atrophy, one of the more common rare disorders. Clark and her friend, Cristin Harrell, have arranged a walk from the Ojai Valley Baptist Church to the “Y” and back, along with a barbecue and concert following the walk, as a means to raise funds toward arriving at a cure, and to emotionally support the Marshall family, who cope with daily challenges. They have named the event “Micah’s March.”

SMA affects one in 6,000 babies, and one in 40 people are genetic carriers, almost always unknowingly. And yet, SMA is the No. 1 genetic cause of death among young children.

Though there is no cure at present for SMA, the Marshall family has joined with 19 other families to raise a total of $100,000 for research because the National Institutes of Health selected SMA from 600 neurological disorders as the disease closest to treatment. Additionally, Clark says, “We don’t want another family to go through this.” With adequate resources, there is hope that a viable cure could be attainable in as few as five years.

A promising research program, headed by Dr. Hans Keirstead, is in the works at the University of California at Irvine. The program also addresses Lou Gehrig’s disease and other conditions. Over the past five years, families coping with SMA, along with others, have raised $1.5 million, but there remains a funding shortage of $500,000. The Marshalls, as part of Unite for the Cure, are trying to raise $5,000. The family of 22-month-old Gwendolyn Strong of Santa Barbara is another of the 20 families pulling together on this project that hopes to fill one-fifth of the funding gap.

What comes to pass for children with SMA is that, due to a missing gene, an essential survival motor neuron is not produced. Muscles, especially those closest to the trunk, do not receive the nerve fibers they need to be fully functional. As the children grow, the ability to walk, sit, stand, eat, breathe and swallow is impacted.

The hope of the Marshall family and others is that the money they raise will allow for adequate staffing and studies to take the research program through a critical Phase I clinical trial in early 2010.

“Micah’s March” will take place Sunday at 5 p.m., beginning at the OVBC. The walk to the “Y” and back encompasses about four miles. There is a $10 registration fee for the walk and a $5 minimum donation to attend the barbecue and concert. To contribute, participate or attain more information, contact Clark at 340-4409. Visit micahsmarch.blogspot.com.