PLEASE NOTE: THIS CLINIC WILL BE FOR THOSE 1 -17. Anyone is welcome! Information and consults will be in English. WE NEED TO HEAR FROM YOU BY December 15, 2019!
BACKGROUND: As many of you are probably aware, ASI realized the long-held dream of establishing an Alstrom Syndrome Center of Excellence, named for Jan D. Marshall in December 2018. Our early efforts 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 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 additional Centers where new patients of any age can go, be supported, and avoid being confronted with ignorance about the Syndrome. Caregivers and adult patients (when appropriate) will receive written comprehensive notes, specific recommendations, and any test results generated.
ONGOING CONSIDERATIONS: Please be aware that the resources of both ASI and GBMC are limited. Sadly, at present we can only accommodate 8 participants per Clinic, and priority is extended to NEW attendees. 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. “Veterans” of previous clinics SHOULD let me know if interested.
WHO: For this particular Clinic we are seeking pediatric participants (aged 1-17) accompanied by a parent or 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: March 5 – 8, 2020. The clinics/consultations will take place on Friday and Saturday, March 6 and 7, so participants and any care-givers will arrive during the day on Thursday, March 5 and depart in the morning on Sunday, March 8.
WHERE: Sheraton Baltimore North Hotel and Greater Baltimore Medical Center GBMC), both in Towson, Maryland. In addition to sleeping rooms, we’ll have dedicated meeting and recreational space at the Sheraton.
WHAT: We expect the following disciplines to be available: Otolaryngology (ear, nose, throat), Audiology (hearing), Ophthalmology (vision), Genetics, Nephrology (kidney), Hepatology (liver), Cardiology (heart), Endocrinology, Behavioral Psychology, and Gastroenterology (gastrointestinal). 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 will have your own examining room, and the various docs will come directly to you. Nice change for most!
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 and to/from GBMC. Rooms will be arranged. All meals (b/l/d) will be provided. Many will be a la carte from the restaurant menu to accommodate individual tastes. There will be a “banquet dinner” on Friday for all participants. Depending on insurance, in rare instances there may be a modest cost associated with a few tests. In all previous clinics, no one 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, please contact Robin by email at robin.marshall@alstrom.org OR call him at (207) 244-7043. Please – email is best (NOT facebook or messenger). We need to hear from you ASAP but no later than December 15 2019!!
