Conemaugh School of Nursing students hold fundraiser to benefit local girl suffering from rare disease
Posted: 2009-09-02
Jamie Eckenrod, a senior at the Comemaugh School of Nursing (SON) and President of the Conemaugh Chapter of the Student Nurses Association of Pennsylvania, was touched by the story of 15-year-old, Jessica Ambroe of Johnstown. So much so, that Eckenrod rallied her fellow SON classmates to help Ambroe, who suffers from a rare and fatal neurogenerative epilepsy called Lafora Disease.
On September 28 at 11 a.m., Eckenrod will present a $1,500 check to Michele Ambroe, Jessica’s mother and a 2005 graduate of the SON, during a brief ceremony at the Conemaugh School of Nursing, Memorial Medical Center’s Main Campus, F Building, Room F301. The funds will go toward Lafora Disease research.
“The senior nurses, faculty and myself were so touched by Jessica’s story that we wanted to support their amazing family,” Eckenrod said. “As a community service organization at Conemaugh SON, we wanted to create local awareness about Lafora Disease, so we decided to hold a bake sale at Richland Fire Hall during Thunder in the Valley, where we raised funds while also passing out informational flyers on Lafora Disease.”
Lafora Disease is extremely rare, with only 10 known cases in the United States; odds of getting it are greater than one in a million. It is a progressive, fatal inherited myoclonus (twitching of the muscles) epilepsy syndrome caused by a gene mutation. Symptoms of the disease include seizures, depression, temporary blindness, muscle spasms, trouble walking, dementia and eventually death.
Jessica Ambroe was diagnosed with Lafora Disease on February 3, 2009. Eckenrod said, “Jessica was a straight ‘A’ student in honors classes, very active in sports and had a loving personality. Now, she must take 24 pills a day to control her seizures and has not been to school full-time since February of this year. It’s a devastating disease.”
“The more people who know about this cruel disease, the better the chance that they will support our cause and help us raise funds and awareness,” said Michele Ambroe. “It is human nature to want to fight on your own, but Jamie said something that changed me forever. She said, ‘It’s better to have an army on your side if you’re going to fight a war,’ so we now have scores of community members in Jess's Army. We are also excited to be officially joining forces with Chelsea's Hope, a non-profit organization comprised of others who are dedicated to winning the war against Lafora Disease.”
Because Lafora is classified as an orphan disease, there is no government funding or foundations that subsidize research; all funds must come from private donations. Michele Ambroe says she is accepting donations locally for Dr. Berge Minassian, a Lafora Disease researcher in Toronto, as well as the few other doctors who are working toward a cure.
“Jessica truly has the chance to be among the first to benefit from the treatment,” said Ambroe. “The more soldiers we recruit in our army fighting Lafora Disease, the better the chance we have at succeeding in eradicating it.”
To make a donation for research or to learn more about Jessica's story or about Lafora Disease visit: http://www.chelseashope.org/jessica_ambroe.html.
About Memorial Medical Center
Memorial Medical Center, the flagship hospital of the Conemaugh Health System, has been recognized with the HealthGrades 2009 Distinguished Hospital Award for Clinical Excellence. This ranks Memorial in the top 5% of all hospitals in the nation for overall clinical performance. For more information, visit www.conemaugh.org.
For More Information, Please Contact:
Amy Bradley, Director of Public Affairs
Phone: (814) 534-3121
Email: abradle@conemaugh.org