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

Kolby Zanier and the HeartWare Pump

Here’s the amazing story of Kolby Zanier, an Alström Syndrome patient with an amazing new technology that stands to change the lives of people suffering from congenital heart complications. It’s great to be alive at a time when such technology is changing lives for the better, and stands to help so many more into the future! Read […]