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!
ASI Family Conference
2013 AGENDA – INCLUSIVE -12-01-2012 Dear Families and Friends, The 7th International Family Conference is just “around the corner” (May 9-13)! Many of you have made your reservations at the Plymouth Radisson; quite a few have submitted their Registration Forms; a few have already paid their Registration Fees. BUT, we are still waiting to hear […]
BJ receives successful heart-lung transplant !!
Please check out this wonderful news about BJ receiving her heart-lung transplant! She asked that we share her story with the Alstrom Family and is looking forward to meeting you all in May! http://www.wcjb.com/local-news-health/2012/10/local-woman-rare-genetic-disorder-continues-inspire
Two runners for ASI in the New York City Marathon
Greetings! I am very excited to report to you all that we have TWO runners in the upcoming New York City Marathon (Sunday November 4) in support of Alstrom Syndrome International . Please check out and support their Giving pages on CrowdRise. Bill Holobowski http://www.crowdrise.com/billholobowski Qraig DeGroot http://www.crowdrise.com/qraigdegroot Many thanks to both runners for undertaking this […]
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 […]
