Alström Angels Golf Classic
Friday October 18, Lubboc Texas! For full information, visit the Alström Angels site! http://www.alstromangels.com/golf-classic.html
Fish on!
It’s that time again! Our very own Gina Denbow has once again planned out a very exciting opportunity for folks here in Downeast Maine with the 3rd Annual Angling for Alstrom fishing tournament! Once again, folks will gather at on Grand Falls Flowage in Woodlands, ME for fishing, socializing, swimming, and of course the cardboard […]
It’s finally time!!!
We are extremely excited that the 7th Alstrom Syndrome Family and Medical Conference is starting up on May 9th!, just a few short days away! We are looking forward to seeing old friends, making new ones, and enjoying all the goings on we have planned in America’s Home Town, Plymouth, MA. If you’re attending the […]
Lubbock family copes with rare genetic disease
By Ellysa Gonzalez 4-year-old Lubbock girl lives with Alstrom Syndrome Five-and-a-half months after her daughter Bryce was born, Cassie Johnston began noticing a strange pattern in Bryce’s eye movements. “Her actual eye balls were wiggling up and down,” Johnston said. “We thought she was having a seizure so we went in to the doctor.” The […]
A Call for Items for the ASI Silent Auction!
The 2013 International Conference in Plymouth, MA is fast approaching, and here’s your chance to help insure it’s a success. We’re looking for items for the silent auction that will be held at the conference. Items in the past have included artwork, outdoor gear, clothing, toys, and lots of other great items. We’re looking for […]
Drop by Drop, Lubbock Family Makes a $30,000 Lake for Rare Disease
Lubbock family turns a devastating diagnosis into a West Texas-sized lake for research. LUBBOCK, Texas – Jan. 25, 2013 – What if your child was the 780th person in the world to be diagnosed with a rare, life threatening disease? One Lubbock family knows exactly how to answer this question; you make a lake. “When […]
Happy Holidays to All from Alström Syndrome International!
From all of us at Alström Syndrome International, we wish everyone the Happiest of Holidays and the best of luck into the New Year! The photo shows the ASI crew at Jan and Robbin’s place, which is all decorated for the holidays!
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 since she was 13, is my student. To play like that with no vision is a miracle in my mind. I hope you all will agree. Enjoy it! One can […]
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 […]
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” is the theme of Rare Disease Day 2012. On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare […]
