Members of the community ranging from educators and attorneys to health and social service providers crowded into Centennial Hall on Thursday for the start of a three-day conference about Fetal Alcohol Syndrome Disorder.
Held every three years, the Southeast Alaska Regional FASD Conference, "Embrace the Reality, Celebrate the Passion, and Create the Hope," was created to increase awareness of FASD as well as create and identify services for those living with the disorder. The international conference, which includes more than 30 speakers, musical performances, panel discussions and workshops, continues through Saturday.
Dr. Sterling Clarren, Robert A. Aldrich Professor of Pediatrics and past head of the Division of Congenital Defects at the University of Washington School of Medicine in Seattle, spoke to the almost 300-person audience Thursday morning.
"We need powerful stories coupled with powerful data," Clarren said. "You guys have the stories. You also need the data. Those two things together will bring change. We're starting to see it now. More will come. Having a room like this of bright-eyed folks who want to do something about this is huge."
Juneau FASD Diagnostic Clinic and conference coordinator Ric Iannolino said although Alaska has the highest FASD rate in the country, it's not being funded anywhere near the level it needs to be.
"It should be a very high priority and it's really not," he said. "We figure about 50 percent of the mothers who had babies with FASD has (it) themselves. So this is a geometric social problem that's spinning out of control, and we have people who really aren't dealing with it at the leadership level of the state."
Speaker Carolyn Hartness, an FASD educator and consultant from Washington, agreed.
"If you recognize how much of it (FASD) is out there, (you'll recognize) we cannot really respond to this the way we respond to cancer, diabetes, heart disease, (Hurricane) Katrina, everything else we seem to run up to the front lines about," she said. "Here are our kids completely unrecognized."
In addition to raising awareness, Hartness wants the public to know that FASD is preventable.
"Everyone has to come together in a model that we're calling the Collaborative Circle of Care in order to really assist the individuals who are affected, their families, whole communities," she said. "That's also an approach that will bring prevention ... to people."
In the field for about 19 years, Hartness has worked mostly in indigenous communities in such countries as Australia, New Zealand and Canada. She particularly enjoys working with tribal communities, due to their closeness, and believes there is great value in cultural intervention.
Whitehorse resident Jenny Jackson, who adopted Crystal Jackson, now 34, when Crystal was 17 months old, said the conference has finally allowed her to tell her story about adopting a child with FASD.
"Crystal is now doing everything the doctors said she would never do," Jenny Jackson said. "She's doing very well, and she gives to society. I provide a safe place for her to live and to develop her abilities, and people love her."
Jenny Jackson's book of poetry, "Silent No More," which she published last year in Whitehorse, was on sale at the conference and her artwork was displayed in the Sheffield Ballroom.
"I'm just hoping there is a better understanding of people with FASD and that they are real people, they have real hopes and dreams and feelings," she said. "They are to be treated with respect and with patience, and we can also learn from them. I've learned much from my little Crystal."
The conference is co-sponsored by the Arctic Regional Training Center and the Central Council of Tlingit and Haida Indian Tribes of Alaska's Tribal Family & Youth Services Department, Office of the President and the Community Services & Self-Governance Division.
Iannolino hopes to get more young adults involved in the 2013 conference.
Contact Neighbors editor Kim Andree at firstname.lastname@example.org.