News & Articles
2013 ASI Family Conference and Scientific Symposium
7th ALSTROM SYNDROME INTERNATIONAL FAMILY CONFERENCE AND SCIENTIFIC SYMPOSIUM The 7th Alstrom Syndrome International Family Conference and Scientific Symposium will be held in at the
Rare Disease Day February 29
February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. “Solidarity”
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
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
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
A must see and hear-Jamie Seeger Hayden Piano Concerto in D
This is a video of Jamie playing a movement of Joesph Hayden’s Piano Concerto in D with her piano teacher. I hope you enjoy the performance. Don’t
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
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
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
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
