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 […]
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 […]
Please spread the word about Alstrom Syndrome. Be creative!
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
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!
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 […]
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 […]
ASsociazione Sindrome di Alström Italia (ASSAI) ASSAI Officially Organized! First meeting of ASSAI Learn more about ASsociazione Sindrome di Alström Italia
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
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 […]