Dr Phillip Pearl nominated by Kathy Gulich
Dr. Phillip Pearl is an amazing man. We adore him, and I have forever been calling him my HERO. I tell him again every time I see him. I have no doubt that the reason Spencer is living such a wonderful life is directly due to Dr. Pearl's research and willingness to put himself out there in order to give us a hopeful chance. You see, it is just by chance that we ended up meeting Dr. Pearl. One of his very capable colleagues was originally assigned to Spencer upon our arrival at Fairfax Hospital. He completed the diagnosis, ordered the ACTH, told us the protocol, and then let us know he was going on vacation and that Dr. Pearl would see us while he was gone. The next day, Dr. Pearl and the ACTH arrived, and upon introducing himself to us, Dr. Pearl let us know that he had been doing a lot of research, and we would be trying a new protocol (twice the amount of ACTH daily for half the length of time) in hopes that this would give us the desired result, while decreasing chances for unwanted side effects.
In the years since Spencer's initial treatments, Dr. Pearl has spent time with us, continuing to treat Spencer, and guide us in the methods to best help Spencer be the best he can be. I google him from time to time and follow all of his continuing work to aid children who are suffering from infantile spasms. Dr. Pearl served on the advisory board that made recommendations to the FDA for approval of ACTH as monotherapy for children with infantile spasms under 2 years of age. (I believe Dr. Brown served with him.)
When Spencer was just 2, he made a marble painting for Dr. Pearl. On our next visit, I was pleased to find it hanging on the wall in his exam room, completing the square of his degrees and diplomas. I believe this is what it is all about. All of the years of studying and hard work have led Dr. Pearl to the ability to change people's lives for the better, and he is not stopping there. He continues to find the next best way to treat his patients all the time.
Once, when Spencer was 5, Dr. Pearl invited us into his office to sit across from him at his desk while the exam room was being prepared. We were just chatting. Dr. Pearl paused for a moment, and said, "I forgot for a minute why you are here. Spencer is sitting here laughing and talking with me, and he had infantile spasms!"
I would like to close with an excerpt from Spencer's sister Niki's essay, written as part of her application to the physician assistant program she is set to begin this summer. It explains why she is going into medicine, and is directly a tribute to Dr. Pearl:
When I was 12, my 4-month old brother was diagnosed with West Syndrome and an uncertain future. My experience with medicine before was limited to my own physicals and watching ER when I was allowed to stay up late, but I was suddenly surrounded by a whirlwind of terminology, treatments and specialists all with the same possibly impossible goal of saving my baby brother. Their passion and dedication made it possible to keep hope, and paved the way to the healthy, Transformers-obsessed 9-year old I am lucky enough to be teased by every day. In the most terrifying moments of my brothers illness, times when the future looked dismal, I watched his health care team and knew beyond any childlike wonder that for the rest of my life, I too would be helping others, and bringing them to a level of health that they may have lost sight of. That is precisely what was done for my family.
I believe Dr. Pearl is an IS HERO, not only to us, but to many families. I would be honored to have him recognized.
Kelly Gulich
Doctor Shani Norberg nominated by Michelle Christenson
What make Dr. Norberg special?? A hero?? To sum it up, Dr. Norberg saved Owen's life. Dr. Norberg didn't waste any time with getting the correct diagnosis of Infantile Spasms and the proper treatment for Owen. She understood that Infantile Spasms is a devastating disease. She knew what to look for and didn't blow us off. She understood that "blasting" the spasms with ACTH would be the best possible treatment for Owen. Dr. Norberg validates what a parent feels about treatment and also educates her families. She is proactive with her practice rather than always being reactive. She is empathetic and compassionate with her patients. We always have felt that she treated Owen as if he was her own child. Dr. Norberg deserves the recognition as an IS hero because she was willing to do what ever it to took to make sure Owen had the best possible outcome. She understands what a family is going through when given a devastating diagnosis. Dr. Norberg has also educated the public by presenting Owens case on the local news station.
Michelle Christenson
Doctor Harry Chugani nominated by Megan Daniel
Early in our research, both at official epilepsy websites and at more informal parent forums, we found that one big name kept cropping up as a foremost expert in the treatment of infantile spasms. That name was Dr. Harry Chugani from Detroit.
One of the most often repeated and to me one of the most appealing things said about Dr. Chugani was that he was very accessible to our community and made it a point to respond personally to all emails from IS parents.
On a whim I decided to put this to the test, and Dr. Chugani passed with flying colors. Within hours of emailing him, I had a thoughtful and thorough reply from him in my email inbox. He was extremely knowledgeable, straight-forward, and because he gave us the exact information we sought we were able to make confident decisions regarding our daughter's care.
He quickly earned my respect, and over the course of the last two years has been a great resource for us as we look for the best course of continued treatment.
In March of this year, Ella began having a new type of seizures that has proven difficult to control through many medication increases and trials. Though our daughter continues to develop in spite of these seizures occurring multiple times a month, we are not willing just yet to settle for ANY seizures in her life. We again reached out to Dr. Chugani and will be traveling at the end of the August, to finally see him in person and to have our daughter evaluated by him and his incredible team at Children's Hospital of Michigan. All the way from Arkansas. Because he literally wrote the book on Infantile Spasms, and we strongly believe that he is the best candidate to guide us in eradicating Ella's seizures once and for all.
Megan Daniel
Doctor Collin Hovinga nominated by Janice Silbermann
Dr. Collin Hovinga is an expert on epilepsy drugs. He is a researcher and sees patients. He could be unapproachable and distant, but instead is one of the kindest men I know. He is excellent at explaining things to a layperson. Things can get overwhelming pretty fast when your child has just been diagnosed with infantile spasms. Dr. Collin makes himself available after-hours to anyone who needs him. He will answer e-mails and phone calls on his own time and give the questions every bit of his attention. When he was in Memphis, he was extremely active in the local chapter of the Epilepsy Foundation. He came to many meetings (again, on his own time) and led workshops on the various drugs available. He makes getting through the diagnosis and shock of infantile spasms a whole lot easier.
Jancie Silberman
Doctor Ammar Katerji nominated by Molli Salzman
Dr. Katerji was our second neurologist that we went with after Charlie's diagnosis and I am so glad we did. We connected much better with him and he was always positive. He had enough experience dealing with infantile spasms that I completely trusted him and his treatment course. ACTH was are only drug to treat Charlie's IS and me and my family will be forever grateful. He was very optomistic about Charlie's prognosis, where others were not. He immediately suggested therapies for Charlie, and gave us the resources to pursue them. I could call him whenever with questions, and he would get back to me that day. He would call me personally with EEG results to give me a peace of mind. While other neurologists seemed to be too afraid of ACTH and its side effects, this was the best option for the best prognosis. Dr. Katerji is a very intelligent neurologist who deserves to be recognized. There are very few pediatric neurologists, and with all other bad scenarios he must endure on a daily basis, he deserves to hear a positive outcome.
Molli Salzman
Doctor Harry Chugani nominated by Emily Kather
I remember being so desperate to find a physician that would treat my sons condition appropriately. My son Benjamin had been having 15-20 clusters of seizures a day for about a month and the neurologist we were seeing was not willing to start our son on the frontline meds that I had read about. I scoured the internet trying to figure out where I should take my son to get him the help he needed. In researching potential hospitals and physicians, I discovered a neurologist referred to as "Dr. Rockstar" in a couple of online blogs. I decided that we should check this doctor out, with a nickname like rockstar he had to be great.
I discovered that this neurologist was a Dr. Harry Chugani at Childrens Hospital of Michigan. Being that it was the weekend, I decided to send an email, mostly to make myself feel better, until the office was open on Monday. I did not expect a reply to my email, but I received a reply an hour or two 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 sons neuro. 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.
Dr. Chugani is well known and loved in the IS community and shows this level of commitment to all parents that seek his help. He is always available and always approachable (I often wonder if he ever sleeps or takes a real vacation!). He is up front and honest, and does not make false promises. He takes the time to educate and empower parents to advocate for their children meaningfully. His office is always full, but he never rushes you out of an appointment. He has conducted research, petitioned to gain FDA approval for drugs that provide a means of stopping the seizures that our children suffer with day in and day out, and has written numerous publications focused on epilepsy and IS. He has assembled a team of professionals that truly work to ensure that your child has access to any and all treatments that might help your child. He is truly devoted to his patients and to improving outcomes for all children that suffer from infantile spasms and childhood epilepsy.
Benjamin has been seizure free just short of two years now. 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 IS 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