YOU are the heroes who will make this happen!!

Dear Alström Family, Many thanks for the compliments following our posts about the Precision Medicine Initiative. A few members need to understand that the work is already underway and that ASI has been energetically involved for about a year, so this is real, not a fantasy. More importantly, the actual payoff will begin shortly when […]

Alstrom Syndrome International ON THE MOVE!

Barack Obama, President of the United States, has announced a new initiative called the Precision Medicine Initiative. What he was really talking about was making medicine relevant and appropriate for specific individuals with specific clinical needs and specific treatments through the use of cutting edge medical technology. Because of its partnership with Genetic Alliance and […]

Vote for Alstrom Angels to win a $10,000 donation for research!

CitiBank in Lubbock Texas will donate $10,000 to the winning charity.  LET’S MAKE SURE THAT ALSTROM ANGELS IS THAT CHARITY! Keep those votes coming Alstrom Land!   Alstrom Angels is currently in first place – You can vote once per day for each of your email addresses. Click here and VOTE AGAIN today: https://www.citybankonline.com/communityrewards#rewards-form

Palmer competes in OFSSA

Congratulations to Palmer for successfully competing in the Ontario provincial cross country championships (OFSSA), Nov 2014 in Waterloo, Ontario, Canada. Palmer ran in the Para category. A little snow, a lot of mud, and the wonderful atmosphere of kids sports….  Way to go, Palmer!

ASI’s Sandra Hubbard-LeBlanc receives the Katharine Pearson award ‘shining example’ of caregiver

Sandra Hubbard-LeBlanc, mother of Cheryl,  member of Alström Syndrome International Board, and chair of ASI’s Canadian branch, received the Katharine Pearson Shining Example Award for promoting her daughter’s independence and high quality of life. She was also recognized for the work she does for caregivers in the local Yarmouth area, including co-facilitating caregiver support groups. “What started […]

2016 – Eighth Alstrom Syndrome International Conference

ASI Conference – Plymouth Massachusetts May 13-16, 2016  ASI is already well into plans and planning for the 8th International Family Conference that will be held, once again, in Plymouth, Massachusetts May 13-16, 2016 at the Radisson Plymouth Harbor Hotel.  The facility is undergoing some serious renovation, the Mayflower is back on station after her […]

International Rare Disease Day 2014

Today is International Rare Disease Day! Spread the word, raise awareness for Alström Syndrome. Wishing you all a productive day for our cause!! Rare Disease Day 2014

ASI Awarded PCORI (Patient-Centered Outcomes Research) Contract

Hello Everyone!It’s always nice to be able to send along really good news. Yesterday, the Genetic Alliance and ten rare disorder partners were awarded a large contract by PCORI (Patient-Centered-Outcomes-Research-Institute). Although we often measure progress by the drop, this is a whole bucket, and it’s making a very big splash too! We will be in […]