Autism Speaks’ co-founders, Bob and Suzanne Wright, joined me in attending the Baltimore DAN! Conference. Also in attendance was Dr. Anita Sostek, AS grants administrator and Pat Kemp, AS Director of Communications. Thank you everyone for coming to DAN!
Bob and Suzanne were delighted to meet so many amazing parents, researcher and clinicians. My parents know how difficult it is for ASD parents to even leave house and were moved by the site of a thousand parents spending money they can barely afford on babysitters and travel expenses in order to learn more about how to help their children. When scientists attend these conferences they are re-imbursed for their expenses- not autism Moms and Dads!
It was great to spend some time with Pat Kemp. He is the father of a severely affected 26-year-old young man. I cannot even imagine the horrors Pat endured as a single Dad trying to get a diagnosis, education or services for his son 23 yrs ago while also raising two other children. Pat joked that he has developed a thick skin. When people tell him “go to Hell,” he replies, “Too late, I’ve already been there.” I know Pat recognized his son’s issues in many of the lectures. I hope the conference was useful to him.
Anita Sostek is AS’ grants administrator. She showed a lot of fortitude to attend a DAN! Conference with me. Poor Dr. Sostek has only been with AS a year but she listened patiently to my long time frustrations and concerns regarding the scientific advisory board. We had a lengthy conversation about the grants AS has chosen and the grants they have rejected. So I want to say thank Dr. Sostek for being open to different point of view and parent feedback.
My Dad is a low maintenance guy dedicated to his family. He never went out after work, doesn’t smoke, gamble, never had a crazy mid life crisis, etc. His only hobby outside work and his family is golf and the Masters, his favorite tournament. Bob Wright loves everything about the Masters, the intensity, the suspense, the handicapping of players, the Tiger Woods drama, Phil Mickelson…I know, many of you reading this, like me, do not share this love of golf but you know what I mean. Speaking for myself, sometimes it is those small pleasures in life, a ridiculous reality show, a great (non autism) book, “People” that keep me sane. So wouldn’t you know it the DAN! Conference was held on the same 3 days as the Masters tournament. My Dad never complained once about missing the whole live event. Instead he diligently sat through hours of lectures taking notes, asking questions and talking to parents.
Highlights included Dr, McGinnis’ comprehensive discussion on how and why regression happens, Dr. Jepson on mitochondrial disorders and autism, Dr. Usman’s healing the gut talk and Dr. Bradstreet’s discussion on the latest biomedical interventions. A low light was Dr. Duane Alexander’s bizarre proclamation that Autism Speaks has decided not to do any vaccine research. For the record Dr. Alexander, Bob Wright says that is categorically untrue. Yes, I would like to see more comprehensive vaccine research but the subject is not off the table.
My Mom, Suzanne, spent hours talking with the DAN! presenters. She loved meeting Dr. Bock, Dr. Hewitson, Dr. Usman, Dr. Boris, Dr. Bradstreet, Dr. Jepson, Dr. Krigsman, Dr. Case and bonded with Dr. Levinson over PTSD. To be fair to my parents it is no picnic attending DAN! with me. At least once I will experience horrible flashbacks to Christian’s regression, hospitalizations, fevers, etc and flee from a lecture room. It’s not a lot of fun for those around me. Dr. Levinson spoke about how and why so many parents are suffering from PTSD. I want to address that some more in another post. Most importantly, these amazing and courageous doctors shared stories of hope and exciting new treatment opportunities. We just need the funding!
Thank you to Jane Johnson for making us feel so welcome and to Lyn Redwood for helping to put together such an incredible conference.
Katie Wright is a Contributing Editor for Age of Autism.