Eric Lancaster receives NORD grant to study stiff-person syndrome

Jan 11 2011

The National Organization for Rare Disorders (NORD) has awarded a research grant for the study of stiff-person syndrome, a rare acquired neurological disorder, to Eric Lancaster, MD, PhD of the University of Pennsylvania. The study is titled, "Auto-Antigen Profiling in Stiff-Person Syndrome." This grant is made possible through funds contributed by Lundbeck Inc. in connection with a special program conducted in the month leading up to Rare Disease Day in 2010. Specifically, Lundbeck conducted a web-based campaign, "Raise Your Hand to Fight Rare Diseases," an initiative for Rare Disease Day 2010 that led the company to donate $10,000 to NORD's general research fund.

“Raise Your Hand to Fight Rare Diseases”

Stiff-person syndrome (SPS) is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. The exact prevalence of SPS is unknown, although the incidence is believed to be approximately 1 in 1,000,000 individuals in the general population. Women are affected twice as often as men. Scientists don't yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.

"Imagine being afraid for your child to spontaneously hug you, or to be greeted by a neighbor, step from a curb, or even leave your house, because of the fear of painful muscle spasms and potentially serious falls. Paralyzing fear and self-induced isolation become your constant companions," said Debra Richardson. "I was diagnosed with SPS in 1994. NORD was my first contact. I am encouraged to know that there are scientists who are interested in this very rare disease and that NORD is able to fund the research."

"There has been limited research on stiff-person syndrome so we were quite pleased when our medical advisory committee granted Dr. Lancaster the award," said Peter L. Saltonstall, NORD president and CEO. "Lundbeck's contribution towards our general research fund was much appreciated and made possible this award that supports a very worthy cause."

Lundbeck introduced the Raise Your Hand to Fight Rare Diseases campaign in February 2010 in recognition of National Rare Disease Day. The web-based initiative was designed to generate support for people with rare disorders and engage the community in raising awareness and research support. In response to individuals clicking an icon on NORD's Rare Disease Day website (www.rarediseaseday.us), Lundbeck made a donation to a general research fund managed by NORD. During the 21-day campaign, more than 4,100 people clicked the icon and hundreds encouraged others to participate in Rare Disease Day by sharing the information through Facebook and Twitter.

"Lundbeck is very pleased to know that our donation through the Raise Your Hand campaign will fund research for this very challenging disease," said Mark Weinberg, vice president in medical affairs at Lundbeck Inc. "Through our work in rare diseases, we've come to appreciate the hardships faced by these communities of patients and the value of research for even the rarest diseases. With Rare Disease Day 2011 around the corner, we look forward to making another meaningful donation through this same campaign."

Source: University of Pennsylvania