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.

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 […]

Amanda inducted into National Honor Society

April, 2011.  Amanda Fee has been recently inducted into the National Honor Society!  Here is a photo of Amanda accepting her award at her High School in Minnesota.  Congratulations Amanda!!

Denbow Family Organizes Fishing Tournament by Gina Denbow

Fundraising…a scary adventure and A LOT of work, but worth it in the end if someone can benefit. About 5 years ago I had a vision of organizing a bass fishing tournament to benefit ASI. I mentioned it to my husband, since he is a member of a bass club in Maine, but that was […]