2019 Conference Attendee Feedback Needed!

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 individually.

You might be very surprised by their thoughts and feelings about their experience and their willingness to share with the survey as an “excuse” to do so. Obviously, you can skip over some sections.

Also, if you already pushed send on your own effort, you can not go back, BUT, if you’ve had additional thoughts/reflections, you can certainly send them to me, and we’ll see that they are recorded. Several have already done just that!

We really do appreciate the effort and we really do analyze and utilize the results. The deadline is extended to this Friday, May 31, midnight, USA Eastern Time.


Upcoming Alstrom Syndrome Multidisciplinary Clinic at Greater Baltimore Medical Center (GBMC)



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 have been working with Clair Francomano, MD at the Greater Baltimore Medical Center. Clair, a longtime friend and valued colleague of Jan’s, now serves as Chair of the Scientific Advisory Board of ASI. To date, we have held Clinics for members of the A-Team, for pediatric patients, ages 1-11 and for adolescents, ages 12 – 17.  These early efforts are designed specifically to familiarize a team of specialists with the syndrome, its range and intensity of phenotypes, and to broaden the awareness of psycho-social issues which have been largely ignored. We have also focused on the assessment and possibilities of cochlear implantation for our kids. Another important goal has been to acquire and maintain consistent longitudinal data and to ultimately have Centers where new patients of any age can go, be supported, and avoid being confronted with ignorance about the Syndrome. Caregivers and adult patients will receive written comprehensive notes, specific recommendations, and any test results generated.


Please be aware that the resources of both ASI and GBMC are limited. Sadly, at present we can only accommodate 8-10 patient participants per Clinic, and priority will be given to NEW participants. Anyone not selected for this clinic will still be eligible to attend future age appropriate opportunities based on medical history, specific medical issues, and the availability of specialty physicians, who donate their time and expertise.

WHO: Adult or late adolescent patients

For this particular Clinic we are seeking adult or late adolescent patients, accompanied by parents or a close experienced relative such as a grandparent. We are not really set up to incorporate healthy siblings, but feel free to consult if you’re stuck.

WHEN: April 19 – 22, 2018

The clinics/consultations will take place on Friday and Saturday, April 20 and 21, so participants and their care-givers will arrive during the day on Thursday, April 19 and depart in the morning on Sunday, April 22.

WHERE: Marriott Towson University and Greater Baltimore Medical Center

In addition to sleeping rooms, we’ll have dedicated meeting and recreational space.


We expect the following disciplines to be available: ENT, audiology, ophthalmology, genetics, gynecology, nephrology, cardiology, endocrinology, life coaching/psychology, and gastroenterology. Part of our time will include a thorough review of cochlear implantation and its possibilities for patients with AS. During the Saturday multi-disciplinary clinic, you (or participant) will have your own examining room, and the various docs will come directly to you.


Parent/Caregivers/Patients are ONLY responsible for transportation to and from Baltimore. ASI will cover all other costs: transportation from the airport or train station both to/from the Marriott Towson and to/from GBMC. Spacious and nicely appointed suites with either one or two bedrooms will be arranged. All meals (b/l/d) will be provided. Most will be a la carte from the restaurant menu to accommodate individual tastes. There will be a “banquet dinner” either Friday or Saturday evening depending on the availability of the professionals involved. Depending on insurance, in rare instances there may be a modest cost associated with a few tests. In previous clinics, no one has been charged more than $100 (USD).


If you wish to attend, you will need to provide GBMC with comprehensive medical records well AHEAD OF TIME, and you will receive specific contact info about what is needed directly from GBMC.


If you are interested, please contact Robin by email at robin.marshall@alstrom.org OR call him at (207) 244-7043. Due to travel plans, email is best. We need to hear from you by February 25, 2018.

ASI Signs 21st Century Cures Sign-On Letter

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.

Sharon Terry finalist for Health 2.0 Patient Activist award — vote!

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 Health 2.0 10 Year Global Retrospective Awards

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, or use your mobile device through the conference to access them at any time.

Take some time and review them all!

Vote for Alstrom Angels to win a $10,000 donation for research!

CitiBank in Lubbock Texas will donate $10,000 to the winning charity.  LET’S MAKE SURE THAT ALSTROM ANGELS IS THAT CHARITY!

Cast your daily vote for Alstrom Angels

Cast your daily vote for Alstrom Angels

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:

ASI Awarded PCORI (Patient-Centered Outcomes Research) Contract

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 touch soon on how YOU can contribute to the success of this project. For now, enjoy this gift of recognition and reward for all that we as the Alström Family have achieved over the years.Our very best wishes to each and every one for the Holidays and for the New Year!
Love to all!