Updates on Information, Opportunities, and an Important Save the Date

Dear Family,

I deliberately used the word “denizens” above because the most common definition is “inhabitant.” However, one also finds “one admitted to residence in a foreign country, “especially an alien admitted to rights of citizenship” and also “one that frequents a place.” All seem suitable for this post since we now have known patients in 72 different countries, but we are united across all differences by our unique relationship to and the necessity of living within the boundaries of Alström Land! Aliens in a strange land indeed!

As I have oftentimes written and as those who attended the last International Conference in Galveston in 2019 are aware, we have long been admirers of Alström UK (ASUK) – its dedicated personnel, its well-developed programs, and its enthusiastic clinicians and researchers. We have also been “jealous” of the relative ease with which they can access government funding, and, also, of the nationwide access that our Alström families there have to aid, support, and services. I like to tease the ASUK leadership that all things are much easier to accomplish when you all live on a small island (where people don’t even speak proper English).

When the ASI Board met in Galveston in May, 2019, we invited Ann Chivers, Chief Executive of ASUK and Alex Rayson-Griffiths, a Patient Trustee of their Executive Board, to visit with us and discuss the future. A number of other “world powers,” such as Canada, Italy, and Turkey, are already represented on the ASI Board with even more engaged on the Scientific Advisory Board. We envisaged a new entity which we dubbed “Alström Global,” and Ann Chivers and I, with some able lieutenants, agreed to meet via ZOOM on a regular basis. We have done so, and over the past 18 months we have evolved an ever-closer collaborative relationship. As a result, I wish to share the following, and I encourage you to do a deep dive into these links.

  1. ASUK will host the first inaugural Alstrom Global Virtrual Conference on Friday and Saturday, December 4 and 5, 2020.  Please see: https://www.alstrom.org.uk/save-the-date/  See you then!
  2. Although many of you participated in ASI’s Patient Registry (ARC), we now encourage you to join the Patient Registry being presented and maintained by ASUK. We really ALL benefit by having a united effort, and we certainly would all REALLY benefit if we could generate an EXPLOSION of data to be mined and exploited by our global community of clinicians and researchers! The late Jan Marshall (Mama Jan) laid the groundwork for this eventuality through her many years of gathering information and data from throughout the world by any means possible: extortion, torture, begging, blackmail, and enormous quantities of love and hugs! I ask you to honor her by resolving to complete your submission by Wednesday, November 11, 2020!!  https://www.alstrom.org.uk/patient-registry/
  3. When you click on this last link, you will find a magnificent collaborative paper written by the best and brightest of our world-class clinicians, scientists, activist parents, and talented lay people. It represents a comprehensive update and extension of the Clinical Guidelines that many of you first received on that laminated card you received years ago in your ASI Welcome Packet or discovered in The Alstrom Syndrome Handbook or, perhaps, read on any number of rare disorder websites. These revised Guidelines are REALLY good, and this paper should be “required reading” for you and for each of your doctors!  https://www.alstrom.org.uk/research-papers/#Clinical-Guidelines

These are truly difficult times, so I’m glad to bring you some good news and to provide you with the opportunity to make some really solid contributions to the welfare of our Alstrom Family!

Be well! Be safe! Stay sane!
Robin