Jan’s Story (from the Bangor Daily News)
This is a reproduction of Jan’s Story, found on the Bangor Daily News. SOMESVILLE, ME – Jan Davis Marshall of Somesville, ME died on September 6, 2016 , leaving her wide network of family, friends and the genetics research community at Jackson Laboratory stunned by her passing. Her dynamic life began in western New York […]
Celebration of Life for Jan Marshall
Hello Friends, Earlier I had indicated that plans to celebrate Jan’s life would be postponed until after both the A-Team Retreat and the GBMC Clinic. However, in part because so many A-Teamers and a number of Alstrom parents will be here next weekend and because many of our Deck House friends are nearby, and certainly […]
From Robin Marshall to All ASI Families
Dear Friends, Thanks for the avalanche of mail and messages. I’m not so good at talking/speaking yet, so I’m writing. This morning my son-in law, Richie, and/or I lost it over the coffee maker, which Jan always sets up, and avocados, which Jan always makes into her special guac. Lily (now 7), our younger granddaughter, […]
A Tragic Message from the ASI Team
All, The evening of September 6th, Jan Marshall, the Chair, Scientific Advisory Board and Board Member of Alström Syndrome International passed away quickly to unforeseen health issues. Jan was truly the heart of ASI, and her loss will be very challenging to overcome. She was our mentor, “Mama”, the point of solace, advice, and support for thousands […]
Call for Photos!
Call for photos! If you have photos from the recent conference in Plymouth, MA, now you can share them! Follow the link and instructions below to send your photos to ASI for inclusion in the photo library! Send Photos to ASI for Uploading To send your photos to ASI for inclusion in the library, simply […]
Alström Syndrome International Represented at Precision Medicine Summit
Washington, DC (February 25, 2016) – Alström Syndrome International, a member of the Community Engaged Network for All (CENA), is represented at the Precision Medicine Initiative Summit being hosted by President Obama today! Amidst several other ‘health data flow’ announcements, Sharon Terry, CENA Principal Investigator, will announce that the Patient Powered Research Networks (PPRN) of […]
Conference Agenda and Schedules now Online!
We have added some new files and pages so that you have early access to all of the activities and the full conference schedule. We also have included links to the websites for all of our activities at this year’s conference. The schedules are available as both HTML or PDF, so you can print them, […]
Online Registration for 2016 Conference is OPEN!
Secure online registration for the 8th Family Conference and Scientific Symposium in Plymouth MA (May 12 – 16, 2016) is now OPEN! Register you and your family today!
Today is National White Cane Day!
Let’s take a moment to admire all of the adults and adolescents with Alstrom Syndrome who are experts in white cane and other adaptive skills! Let’s also take a moment to admire the little ones who are just learning white cane skills! Associazione Sindrome di Alström Italia (ASSAI) ASSAI Officially Organized! Learn more about ASsociazione Sindrome di […]
2014 Master Golf Tournament Raffle!
Full details on the Alström Angels website: http://www.alstromangels.com/2014-masters-tickets.html
