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 been working with Clair Francomano, MD at Indiana University School of Medicine and IU Health. Clair serves as Chair of the Scientific Advisory Board of ASI. To date, we have held numerous Clinics for members of the A-Team, for pediatric patients, ages 1-11 and for adolescents, ages 12 – 17. Those 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 have also focused on the assessment of and possibilities for 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 and be supported early in the diagnostic process.
Ongoing considerations
Please be aware that the resources of both ASI and of IU are limited. Sadly, at present we can only accommodate 8 patient participants per Clinic, and first refusal is extended to new participants.
When
June 16 – 19, 2022. The clinics/consultations will take place on Friday and Saturday, June 17 and 18, so children and their caregivers will arrive during the day on Thursday, June 16 and depart in the morning on Sunday, June 19.
Who
For this particular Clinic we are seeking children, aged 3 – 17, who should be accompanied by parents or a close experienced relative such as a grandparent. We are not really set up to include siblings, but feel free to consult if you are stuck.
Where
Marriott Courtyard Capitol and the Pediatric Care Center at Indiana University. In addition to sleeping rooms, we will have dedicated meeting space at the hotel.
What
We expect the following disciplines to be available: ENT, audiology, ophthalmology, genetics, 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. Basically, your child will have his/her own examining room, and the various specialists will come directly to you, all over just two days!
Costs
Parent/Caregivers/Patients are only responsible for transportation to and from Indianapolis and from the airport to the hotel. The hotel is only 13 miles from the airport. ASI will cover most other costs: transportation to/from the University, meals (b/l/d), and nicely appointed rooms with two beds. Most meals will be buffet or 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 your insurance, there may be a modest cost associated with a few tests.
Must do
If you wish to attend, you will need to provide IU (Dr. Francomano) with comprehensive medical records well ahead of time and you will receive specific contact info about what is needed directly from Clair’s staff, along with conventional consent forms.
What next?
If you are interested or have questions, please contact Robin at ro************@al*****.org OR call him at (207) 244-7043.
