To: Adult Patients (and their parents) with Alstrom Syndrome
From: Robin Marshall, Executive Director, Alstrom Syndrome International
Re: 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).
Date: September 26 – 29, 2019
PLEASE NOTE: FOR THE FORESEEABLE FUTURE, THE FALL CLINIC WILL BE HELD THE LAST WEEKEND IN SEPTEMBER AND WILL BE FOR ADULTS (18+), WHILE THE MARCH CLINIC WILL BE HELD THE FIRST WEEKEND IN MARCH AND BE FOR PEDIATRIC PATIENTS (1 – 17). IN BOTH CASES ALL ARE WELCOME REGARDLESS OF NATIONALITY.
BACKGROUND: As many of you are probably aware, ASI realized the long-held dream of establishing an Alstrom Syndrome Center of Excellence at the Greater Baltimore Medical Center. Efforts for the first few years were 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 multiple Centers geographically where new patients of any age can go and be supported early in the diagnostic process and then have an ongoing relationship.
ONGOING CONSIDERATIONS: Please be aware that the resources of both ASI and of GBMC are limited. Sadly, at present we can only accommodate 8 patient participants per Clinic, and first refusal is extended to NEW participants.
WHEN: September 26 – 29, 2019. The clinics/consultations will take place on Friday and Saturday, September 27 and 28, so children and their caregivers will arrive during the day on Thursday, September 26 and depart in the morning on Sunday, September 29.
WHO: For this particular Clinic we are seeking adult patients accompanied by a parent or a close experienced relative such as a grandparent. We are not really set up to incorporate younger siblings, but feel free to consult if you are really stuck.
WHERE: Sheraton Baltimore North (https://www.marriott.com/hotels/travel/bwins-sheraton-baltimore-north-hotel/) and Greater Baltimore Medical Center (https://www.gbmc.org/). In addition to sleeping rooms, we’ll have dedicated meeting and recreational space.
WHAT: We expect the following disciplines to be available: ENT, audiology, ophthalmology, genetics, gynecology, nephrology, cardiology, endocrinology, life coaching/psychology, and gastroenterology. Some topics may be addressed in a group setting and/or by a panel. Part of our time will include a thorough review of cochlear implantation and its possibilities for patients with AS. Basically, you/your child will have his/her own examining room, and the various docs will come directly to you.
COSTS: 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 Sheraton North and to/from GBMC. Spacious and nicely appointed rooms with either one king or two queen beds 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 on Friday to which all professionals will be invited. It is likely that the Pharmaceuticals with which ASI is working will be present. Depending on your insurance, in very rare instances, there may be a modest cost associated with a few tests. No one, and only a very few, has been charged more than $100 (USD).
MUST DO: 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.
WHAT NEXT?: If you are interested, immediately contact Robin at
ro************@al*****.org
OR call him at (207) 244-7043. Remember – new patients will receive preference but all are welcome to signify their interest and be considered if possible.
