Research Findings Provide Insights – The Alstrom Syndrome Journey
In the course of their effort to advance trial participation and to ultimately gain approval for the anti-hyperphagia drug Setmelanotide, Rhythm Pharmaceutical, with the cooperation of Alstrom Syndrome International, generated the following report to aid those interested in or needing to understand the lived experience of those impacted by Alstrom Syndrome. Ultimately, the FDA did […]
Don’t Miss Out on the Early Bird Special!!!
Don’t miss it! Pay Now: Early Bird Special! Register by January 31, 2019 and receive a 10% discount on registration costs! Register Now to enjoy the Early Bird savings!
Upcoming Alstrom Syndrome Multidisciplinary Clinic at Greater Baltimore Medical Center (GBMC)
PLEASE NOTE: THIS CLINIC WILL BE FOR THOSE 17 AND UP. WE NEED TO HEAR FROM YOU BY FEBRUARY 25! BACKGROUND As many of you are probably aware, ASI has realized the long-held dream of establishing an Alstrom Syndrome Center of Excellence. In what we hope will be the first of several additional centers, we […]
2nd Annual Angling for Alstrom is August 4th!
Gina Denbow has done it again. While being a full time mother and teacher, she has managed to pull together one of the highlights of my summer: The 2nd Annual Angling for Alstrom bass tournament in Woodlands, ME! As an avid fisherman and a volunteer for Alstrom Syndrome International, this is an exceptionally exciting event […]
Skiing Facts – by Lauren (age 10)
Skiing Facts By Lauren – Age 10 Do you want to go skiing? First you need skis, boots, and a helmet. If you can’t see or can’t hear, you need extra equipment. You might need an FM system or an extra helper, or a bamboo pole. Your guide helps you go down the slope to […]
Gabe Iacovino – persistence!
I would like to share a story about the success and determination of a child with Alstrom Syndrome in the hopes that not only that it may not only inspire but assist others whose lives have been affected by this disease. Aside from the physical manifestations of Alstrom’s and the severe medical complications that arise […]
Inaugural Regional Reunion a Success
Fourteen families were represented at the SE Regional Family Reunion held December 2-4, 2011 at the Unicoi Lodge in Helen, Georgia, site of our International Conference in 2010. Although there was little formal structure, it is fair to say that a theme of “Things Have Changed” united the informal presentations that were made and a […]
Jette’s Story
This is a video shared by the Bosma family from Holland. They are the proud parents of a beautiful daughter Jette, 19 months old, who is affected with Alstrom Syndrome. The first six months of her life she was hospitalized because of her cardiomyopathy and nystagmus, and other serious problems. Jette has had a tough […]
Millie’s Story
This is a short film made by Michelle Hough, from the UK. It is set to Portia’s Song from Friends and Heroes and features her wonderful daughter Millie and her story from birth to now. Millie was in intensive care at 5 1/2 weeks with heart failure and the road since has been a very […]
Love is Blind: Marty Klinkenberg, The Telegraph-Journal
Here’s a link to a magnificent piece written on Alström Syndrome, ASI, and Katelyn Denbow and family, published to Canada’s Telegraph-Journal. An exceptional article, both touching and educational. http://telegraphjournal.canadaeast.com/alerts/article/1442620
