News & Articles
Jamie Seeger Plays Bohemian Rhapsody by Freddie Mercury
Enjoy Jamie Seeger’s great performance of one of the world’s greatest melodies ever written, Bohemian Rhapsody. Jamie’s piano instructor states, “Jamie, who has been blind
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
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
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
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
