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 […]
To All ASI Families and Friends
You’ve probably been wondering why you’ve not received an ASI newsletter lately, not since the spring 2011 issue. You may be wondering if the ASI newsletters will still be published. Well, the Foor family hasn’t quit our publishing commitment with ASI for the newsletters, we’ve just been extremely busy and the summer months have just […]
British Marque Car Club Fund Raiser in Northport, ME
August 26 – 28 witnessed the 9th British Marque Car Club Rally in Northport, ME and ASI was chosen as the designated charity! A successful event by anyone’s standards, members of ASI were privileged to be invited to the opening night banquet, and Katelyn Denbow spoke to a captivated crowd about ASI and Alström Syndrome. […]
1st Annual Angling for Alström a Wonderful Success!
If someone had told me 6 months ago how much work was involved in planning a fundraiser like the 1st Annual Angling for Alström, I’m not sure I would have stuck with the plan and made it to July 3. But WOW, I’m sure glad I did! The day began at 7am with the sun […]
