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Questcor and Child Neurology Foundation Support the 5th Annual Infantile Spasms Awareness Week
- IS Hero Award goes to Dr. Carolina Amador and the staff at Lincoln Health Center, Corvallis, Oregon
HAYWARD, Calif., Dec. 9, 2013 /PRNewswire/ -- Questcor Pharmaceuticals, Inc. (NASDAQ: QCOR) today announced that it is partnering with the Child Neurology Foundation (CNF) in support of the 5th annual Infantile Spasms Awareness Week, which is taking place this week.
As part of this education effort, CNF has developed a website, www.infantilespasmsinfo.org, that provides information on IS from leading child neurologists and shares stories from families coping with this devastating condition. Earlier this year, CNF launched the Infantile Spasms Parent Mentor Network on the website so that parents of newly-diagnosed children can connect directly with parents who have been through a similar experience with their child. CNF has also developed an educational IS brochure and DVD that it makes available to physicians and parents alike.
This year, CNF is also launching a "mini-grants" program for infantile spasms, funded by a new grant from Questcor, that will allow parents to apply for funding to pay for needed services for their children (from speech therapy to wheelchairs to learning aids) that are not covered by insurance. CNF is administering the program, and overseeing all elements of the application process and the disbursement of funds.
"Questcor is privileged to continue its five-year partnership with the Child Neurology Foundation," said Steve Cartt, Chief Operating Officer for Questcor. "The goal of Infantile Spasms Awareness Week is to provide pediatricians, child neurologists, parents, and caregivers with objective educational tools which will help increase awareness and understanding of this very rare form of epilepsy. We are committed to supporting both the infantile spasms community and the child neurologists who treat children suffering from this potentially devastating condition."
As part of Infantile Spasms Awareness Week, the CNF announced that Dr. Carolina Amador and the staff at Lincoln Health Center in Corvallis, Oregon, have been selected as this year's Infantile Spasms Hero.
John Stone, executive director of the CNF, commented, "The IS Hero Award recognizes a deserving physician and medical institution, nominated by a parent, for making a positive difference in the life of a child with IS. This is another way we can draw attention to IS and recognize the important contributions made by child neurologists and pediatricians in the care of these infants."
Dr. Amador was nominated by Rachel Harrington whose daughter was cared for by Dr. Amador after initially being misdiagnosed, a common occurrence in children with IS:
"Dr. Carolina Amador sets the bar for what we need from pediatricians when treating Infantile Spasms," Rachel Harrington said in her nomination statement. "When I called her office and described what my daughter was doing, she made time to get her in for an appointment within 24 hours. When shown the home video of my daughter's spasms, she recognized right away that this was a neurologic event and immediately ordered an EEG. She mentioned that she suspected infantile spasms, but knew that it should be confirmed.
"Dr. Amador traveled two hours to the hospital to see us on a Sunday and encouraged us to stay until we could get a second opinion. Only after staying an additional night and meeting with the head child neurologist at the hospital did my daughter receive her correct diagnosis (of infantile spasms).
"My daughter went seven days from her first spasm to the diagnosis and control of them. This is unprecedented and a major factor for why my daughter is doing so well today. If Dr. Amador had not done what she did to facilitate the immediate testing and if she had not encouraged us to stay for a second opinion, there is truly no telling how long we would have waited for a correct diagnosis and how much damage would have been done. Dr. Amador is a true hero to us and, in our house, her name is spoken with reverence."
Stone also announced that Heather Olson, MD, of Children's Hospital in Boston was selected to receive its annual IS Research Award, also supported by Questcor. Dr. Olson's research is focused on understanding the genetic causes of infantile spasms and related epilepsies.
"Questcor has been a terrific partner to work with over the past five years," Stone commented. "Their funding has helped provide support that would otherwise not occur because of the ultra-rare nature of infantile spasms."
Infantile Spasms
Infantile Spasms is a severe, ultra-rare form of epilepsy that affects infants, with onset typically occurring during the first year of life in about 90 percent of cases. IS incidence is estimated at approximately 2,000 new cases in the U.S. per year, which can be classified as an ultra-orphan disease. For comparison, orphan disease designation pertains to diseases that affect fewer than 200,000 people. IS patients experience rapid, characteristic muscular contraction or extensions lasting one to two seconds and occurring in clusters ranging from a few spasms to more than 100 spasms per cluster. Often, in the beginning, the attacks are brief, infrequent and not typical, so it is quite common for the diagnosis to be delayed. Frequently, due to the pattern of the attacks and the cry that an infant gives during or after an attack, the attacks are sometimes initially thought to be due to colic or gastric distress.
About the Child Neurology Foundation
Founded in October 2000, the Child Neurology Foundation was created as the outreach and philanthropic arm of the Child Neurology Society. Members of the CNS include more than 1,300 child neurologists from the United States, Canada, as well as more than 30 other countries around the world.
The Foundation's mission is to advocate for children and adolescents with neurologic and developmental disorders; fund neurologic research of young investigators; promote awareness of career opportunities in child neurology; provide public, professional, and patient education programs; and support the activities and mission of the CNS.
For more information on the CNF, please visit www.childneurologyfoundation.org.
About Questcor Pharmaceuticals
Questcor Pharmaceuticals, Inc. is a biopharmaceutical company focused on the treatment of patients with serious, difficult-to-treat autoimmune and inflammatory disorders. Questcor's specific areas of focus are in the fields of neurology, nephrology and rheumatology, and the company is currently supporting research efforts in a variety of conditions having significant unmet medical need. For more information about Questcor, please visit www.questcor.com.
SOURCE Questcor Pharmaceuticals, Inc.
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