Upcoming Alstrom Syndrome Multidisciplinary Clinic in September 2021

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 Development (PFDD) Initiative on the day before the actual clinic begins. More information is on the FDA website at this link.

Date: September 22 or 23 – 26, 2021

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 23 (or 22 if presenting ON the 23rd ) – 26, 2021. The clinics/consultations will take place on Friday and Saturday, September 24 and 25, so children and their caregivers will arrive during the day on Thursday, September 23 and depart in the morning on Sunday, September 26th If participants are interested and available and chosen for the PFDD Symposium, they would arrive on the 22nd.

WHO: For this particular Clinic we are seeking adult patients (A-Teamers) accompanied by a parent or parents or a close experienced relative such as a grandparent or sibling. We are not really set up to incorporate younger siblings, but feel free to consult if you are really stuck.

WHERE: Sheraton Baltimore North and Greater Baltimore Medical Center. 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 Saturday evening to which all professionals will be invited. It is possible that any pharmaceuticals with which ASI is working will also 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 TIMEand you will receive specific contact info about what is needed directly from GBMC.

WHAT NEXT?: If you are interested, immediately contact Robin at robin.marshall@alstrom.org OR call him at (207) 244-7043.

Remember – those who have never attended a GBMC Clinic will receive preference, but all are welcome to express their interest and be considered if possible based on space.

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.

THANK YOU!

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

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 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.

ONGOING CONSIDERATIONS

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.

WHAT DISCIPLINES TO BE AVAILABLE

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.

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 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).

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. 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:
https://www.citybankonline.com/communityrewards#rewards-form