Please note: this clinic will be for those 3 to 17 as of June 1. Background As many of you are probably aware, in 2015, ASI realized its long-held dream of establishing an Alstrom Syndrome Center of Excellence at Greater Baltimore Medical Center. In what we intend to be the second of several additional centers, we have […]
Upcoming Alstrom Syndrome Multidisciplinary Clinic at the Jan D. Marshall Center of Excellence for the Treatment of Alstrom Syndrome at Greater Baltimore Medical Center (GBMC). AND, this year only, an opportunity to attend or participate in a daylong presentation about Alstrom Syndrome for and with guidance from the FDA as part of its Patient-Focused Drug […]
Dear 2019 Conference Attendees, I’m writing again to encourage you to complete the attached Survey Monkey survey, regarding your experience in Galveston earlier this month. To date, fewer than 60 individuals have done so. I also have a suggestion! Take this opportunity to sit down with your children and to complete the poll with them […]
PLEASE NOTE: THIS CLINIC WILL BE FOR THOSE 17 AND UP. WE NEED TO HEAR FROM YOU BY FEBRUARY 25! BACKGROUND As many of you are probably aware, ASI has realized the long-held dream of establishing an Alstrom Syndrome Center of Excellence. In what we hope will be the first of several additional centers, we […]
Alström Syndrome International was one of over 200 patient and research associations that signed this letter of support for moving the 21st Century Cures legislation forward in the United States. Yesterday, the National Health Council formally submitted the letter to leadership and released it to the press. Read the 21st Century Cures Act sign on letter (pdf)
Sharon Terry — with a great team — is Genetic Alliance, a good friend to ASI, and a partner in many of our endeavors. Jan would surely be voting for her, please take a moment to vote your support using the form at the link below. Sharon’s name is in the “Patient Activists” category. The […]
What a wonderful coincidence that our 7th Annual International Conference and Scientific Symposium falls on Mother’s Day weekend! ASI planned a fantastic tribute to all of the wonderful mothers who are here with their families— a Thanksgiving-style feast at the historic Plimoth Plantation. A fitting event to honor the women of our Alström community, and […]
The private room at East Bay Grille was a perfect fit for our group, and the staff was wonderfully accommodating. A nice taste of New England before the group headed out on the bus for Plimoth Plantation.
Always a high point of the conference, the “ask the A team” session is underway now— a chance for candid conversation between adults with Alström Syndrome, parents, treating physicians and researchers. Shannon Caldwell leads the discussion, and it looks like most attendees have turned out for this special opportunity.
We just couldn’t wait to get some pictures up from yesterday’s Duck Boat tour!