SON student awarded $30,000 grant to establish advocacy organization

By Dan Bodene, contributing writer

What if your child had a baffling ailment, and you don't know where to go for answers, support or resources? Emily Kather, a master’s candidate in the Oakland University- Beaumont Graduate Program of Nurse Anesthesia, wants to make sure that doesn’t happen to anyone else the way it happened to her.

Kather recently received a $30,000 grant from Questcor Pharmaceuticals to establish the Foundation for Awareness of Childhood Epilepsy and Infantile Spasms (FACEIS).

The foundation will provide awareness, information and a forum for parents whose children suffer from disorders that are frequently misunderstood and even misdiagnosed. Kather knows all too well why such a foundation is needed.

In 2009, Kather’s son Benjamin began suffering seizures, known as infantile spasms. Information and resources were in some cases available, but were hard to find and scattered all over. “I thought, I’m a nurse and I’m really struggling to get my son what he needs,” said Kather.

She and her husband went to several specialists before finding one who recognized what was happening to their son and could recommend effective treatment. Unfortunately, the treatment involved a drug not then approved by the federal Food and Drug Administration (FDA). Kather and her husband had to initially source the drug in Canada, and traveled there monthly. The drug, Vigabatrin, did not stop the seizures, so her son was then prescribed injections of a high-dose steroid called Acthar Gel. These injections effectively stopped the seizures.

Later, she testified in Washington, D.C. before the FDA to help get Acthar Gel approved in the United States for use in infantile spasms. It was then that the idea occurred to her – why not create a resource for other parents who were going through the same thing?

“In researching it, I found there were a lot of parents who have a lot of questions on early intervention, physical therapy and medications,” Kather said. “It’s hard for parents to get an objective view on what their child needs and is experiencing.”

After talking to representatives of Questcor, which makes the drug Kather’s son requires, Kather’s idea took shape. “I thought a website was needed first because it could bring together a lot of healthcare professionals and resources,” she said.

By then a member of a parent advisory board at Questcor, Kather approached the company to fund a grant to establish FACEIS.

“When they accepted my proposal, I thought, 'I got the grant!' Then it hit me and I was like, ‘I have a lot of work to do,’” said Kather.

She said the first step will be to create the website, which will include physician, corporate and parent advisory boards to review content, and a web forum. Kather plans on including sections devoted to treatment options, and an awareness campaign to stimulate community-level fund-raising efforts to help the research community.

Later, Kather plans on establishing nationwide awareness activities such as Infantile Spasms Awareness week later this year. Meanwhile, she’s working on acquiring tax-exempt status for FACEIS.

Throughout it all, Kather credits the OU School of Nursing for providing help, support and encouragement.

“The nurse anesthesia faculty really worked with me to help me succeed in school and at the same time be a good parent,” she said. “The reason I’m still in school is because of the instructors – they made it work for me. And, of course, I’m so gratified that Questcor is supporting my ideas.”

There’s one other acknowledgement Kather wants to make: “My son is doing wonderfully,” she said.