Welcome

Dear Alström Family and Friends,

My name is Eric Beresford, and I am the Executive Director of Alström Syndrome International. I’ve had the great pleasure of meeting many of you during our Baltimore, Indianapolis clinics, and the ASI Conferences in Baltimore and Galveston, TX. There are still many more families to meet and even more seeking to join this amazing family, which is Alström Syndrome International. Under the guidance and supportive wisdom of Robert (Robin) Marshall, who you all know and love, ASI introduced changes to the Executive Leadership Team early last year. Chase Palmer became ASI President, Jennifer Potter became ASI Treasurer, and Gina Denbow became Chair of the ASI Board of Directors. Additionally, Mike Kirby remains our secretary and Dr. Clair Francomano remains our Chair of the scientific advisory board.  We are all blessed to serve ASI in a capacity to the best of our abilities. Working together as one Team, with one common goal, to the support the health and wellbeing of individuals effected with Alström Syndrome.

Once you have joined ASI you will find surrounded by a number of Alström parents and family members who selflessly dedicate their time and efforts in supporting ASI’s clinics, conferences and gatherings. You will also be surrounded by high quality science presentations and clinical updates from the world’s leading clinicians and researchers regarding the treatment of all aspects of Alström Syndrome. Currently, we hold both a pediatric clinic in March and an adult clinic in June of each year in Baltimore and Indianapolis, respectively. ASI also holds an International Conference every three years, with the most recent held 2023 in Baltimore, Maryland. For additional insight into Alström Syndrome, a great resource is our Patient-Focused Drug Development (PFDD) presentation provided to the Food & Drug Administration. https://www.alstrom.org/pfdd/

Alström Syndrome International is extremely fortunate to have a talented and supportive Board of Directors, a superb Scientific Advisory Board of dedicated of doctors and researchers, the A-Team, made up of talented and accomplished Alström adults, Family Support Coordinators, who provide initial and ongoing contact, information, support, and guidance through the often-difficult maze of dealing with Alström Syndrome.        

You will find that everything about Alström Syndrome is challenging! The ALMS-1 gene responsible for causing Alström Syndrome is a very large gene by comparison to other genes, and therefore contains over 250 different disease-causing variants. So, the actual variation in everyone is very challenging to locate. Additionally, no two individuals, even siblings, having the exact same genotype results in the development of differing medical conditions, phenotypes, and severity for each condition.

Our social media campaign strongly supports and shares among other Alström afflicted individuals, families, and caretakers. We support (2) Facebook platforms, a private page for more personal discussions https://www.facebook.com/groups/33208859609 https://www.facebook.com/groups/33208859609and a public page as well at the links listed here https://www.facebook.com/alstromsyndromeinternational

The Mission Statement of Alström Syndrome International is “To provide support, information, and coordination world-wide to families and professionals effectively treating Alstrom Syndrome as we work toward a cure.” 

Whether you a person with Alström, a parent of an individual with Alström Syndrome, or purely engaged to support the Alström community, you are welcomed at Alström Syndrome International, where we encourage uniqueness and embrace our diversity!

Respectfully,

Eric J Beresford, PharmD, BCMAS

Executive Director, Alström Syndrome International