Fish on!
It’s that time again! Our very own Gina Denbow has once again planned out a very exciting opportunity for folks here in Downeast Maine with the 3rd Annual Angling for Alstrom fishing tournament! Once again, folks will gather at on Grand Falls Flowage in Woodlands, ME for fishing, socializing, swimming, and of course the cardboard […]
Mother’s Day Celebration Feast
What a wonderful coincidence that our 7th Annual International Conference and Scientific Symposium falls on Mother’s Day weekend! ASI planned a fantastic tribute to all of the wonderful mothers who are here with their families— a Thanksgiving-style feast at the historic Plimoth Plantation. A fitting event to honor the women of our Alström community, and […]
A Team Luncheon
The private room at East Bay Grille was a perfect fit for our group, and the staff was wonderfully accommodating. A nice taste of New England before the group headed out on the bus for Plimoth Plantation.
Ask the A Team
Always a high point of the conference, the “ask the A team” session is underway now— a chance for candid conversation between adults with Alström Syndrome, parents, treating physicians and researchers. Shannon Caldwell leads the discussion, and it looks like most attendees have turned out for this special opportunity.
Photos from Boston trip
We just couldn’t wait to get some pictures up from yesterday’s Duck Boat tour!
ASI Day two: Parents go to class, kids go to Boston!
Day Two of the conference is well underway, and we are delighted with the program that has been put together— informative sessions for parents and professionals, and fun activities for Alström children and adults alike. By 8:45am we had a lobby full of folks ready to get on the chartered buses to Boston, and after […]
Families from around the world
We have families from 16 countries attending our 7th Annual conference, including this nice group from Turkey chatting with Nevin Bengur here in the lobby. The conference has a full plate of activites on the schedule for family members of all ages— day trips to Boston for sightseeing and Plimoth Plantation for an authentic 16th […]
ASI is on-site and ready to go
Families are starting to roll in to the 7th Annual Alström Syndrome International Family & Medical Conference— old friends have started getting reaquainted and new families are brightening the day (even the rainy parts)! Volunteers like me will be updating the blog and striving to keep everyone informed of the conference as it goes on. […]
It’s finally time!!!
We are extremely excited that the 7th Alstrom Syndrome Family and Medical Conference is starting up on May 9th!, just a few short days away! We are looking forward to seeing old friends, making new ones, and enjoying all the goings on we have planned in America’s Home Town, Plymouth, MA. If you’re attending the […]
Lubbock family copes with rare genetic disease
By Ellysa Gonzalez 4-year-old Lubbock girl lives with Alstrom Syndrome Five-and-a-half months after her daughter Bryce was born, Cassie Johnston began noticing a strange pattern in Bryce’s eye movements. “Her actual eye balls were wiggling up and down,” Johnston said. “We thought she was having a seizure so we went in to the doctor.” The […]
