“One out of four children have a neurologic problem, and it will take everyone’s advocacy to ensure the best quality of life for all affected children,” said Lawrence W. Brown, MD, Associate Professor of Neurology and Pediatrics at the Children’s Hospital of Philadelphia and President of the Child Neurology Foundation. “Questcor has shown outstanding corporate responsibility and leadership demonstrating how industry can be full partners with physicians, scientists and parents to achieve this goal.”

Questcor makes the drug H.P Acthar Gel which was cleared for marketing by the U.S. Food and Drug Administration in 2010 as a treatment for infantile spasms.  For the past three years, the company has supplied an unrestricted educational grant to the CNF to fund Infantile Spasms Awareness Week. The goal of IS Awareness Week is to provide pediatricians, child neurologists, parents, and caregivers with objective educational tools which will help increase awareness and understanding of infantile spasms.

As part of this education effort, CNF has developed a website, www.infantilespasmsinfo.org, an educational IS brochure and DVD that provides information on IS from leading child neurologists and shares stories from families coping with this devastating condition. Questcor also provided CNF a grant for the IS Hero Award which recognizes a deserving child neurologist and medical institution, nominated by a parent, for making a positive difference in the life of a child with IS.  In addition, the company funds a yearly IS research grant.

Dr. Brown noted that in addition to specific initiatives focused on infantile spasms that Questcor supports the Swaiman Medical Scholarship Program, a mentoring program funded by the CNF that provides up to 10 summer clinical research scholarships.  He also praised the company for making a 10-year commitment to funding the Child Neurology Society’s Phillip R. Dodge Young Investigator Award.

John Stone, executive director of the CNF, said Questcor also was being recognized for their comprehensive patient assistance programs put in place by the company to ensure timely access to Acthar for all children with IS regardless of insurance or economic status.  Stone said the company also provides one vial of Acthar free of charge to interested children’s hospitals so that care can begin immediately.  Nearly 150 hospitals participate.

“Questcor has truly stepped up to the plate when it comes to serving its patient population,” Stone said.

Steve Cartt, Executive Vice President and Chief Business Officer for Questcor, accepted the Corporate Citizenship Award on behalf of the company this past Saturday at CNF’s annual fundraiser in Minneapolis.

“We are very honored to receive this recognition from the Child Neurology Foundation,” Cartt said. “Further research into infantile spasms is imperative and we feel strongly about supporting initiatives that will advance the knowledge and treatment of this devastating condition.  We also feel very strongly about supporting the child neurology community in general and to help advance the cause of research and education.”

This year’s theme: “ADHD, Get the Facts.”

To build awareness of the science, treatments, and consequences of untreated ADHD.

Read more at www.adhdawarenessweek.org

2011 Infantile Spasms Hero Award

Once again, in conjunction with I.S. Awareness Week, CNF is proud to announce this year’s outstanding family who has helped raise I.S. awareness while also helping the Foundation recognize an outstanding child neurologist.  The Kather family wishes to share their award with Dr. Harry Chugani.

My son Benjamin began having seizures at six months old.  His prognosis was looking pretty grim considering he had already failed two meds and had been seizing relentlessly for almost three months.

I remember being so desperate to find a physician that would treat my sons condition appropriately. I discovered Dr. Harry Chugani at Children’s Hospital of Michigan.  I sent an email and did not expect anything until after the weekend, but I received a reply an hour later.  Dr. Chugani connected us with a nurse practitioner, arranged an appointment for us with his colleague, and made sure we had the correct information sent over from our son’s neurologist.  He did all of this from the airport lounge on the weekend en route to a speaking engagement.  This is just one small example of Dr. Chugani’s commitment to his patients.

We then moved onto ACTH injections once Ben was maxed out on Vigabatrin.  Ever since, Benjamin has been seizure free. He runs, laughs, climbs on the kitchen counter, talks up a storm, plays with his older brother, and gives some of the best hugs and kisses.  I owe this miracle to the dedication, devotion, and knowledge of Dr. Harry Chugani.  He embodies all that an I.S. hero is and should be. Dr. Chugani is truly a champion for the cause, and my family will be forever grateful for the time, caring, and compassion he has shown us.

- Emily Kather

I am very humbled and honored to receive the IS Hero Award. Infantile spasms is such a devastating, but treatable disorder, that we (physicians) have to go that extra mile to make these children better.  What drives me is the emotional despair of the parents once they have read up on the disorder.

I ask myself what I would do if I were in their situation.  We know that we don’t always make the children better, but still, the parents know that we have tried, particularly if we make ourselves easily available to them and they know we are there for them.  I’d like to thank the Child Neurology Foundation for all of their efforts to increase awareness and understanding of infantile spasms.  I’d also like to thank Questcor Pharmaceuticals for the company’s support for these initiatives and for their support of research into the underlying causes of IS.

- Dr. Harry Chugani, Professor and Chief, Pediatric Neurology with Children’s Hospital of Michigan & Rosalie and Bruce Rosen Professor of Neurology with Wayne State University School of Medicine.