About Mike Kirby

Mike is a volunteer for ASI who deals mostly with Internet stuffs. He loves to support the artistic efforts of the Alström community, and is known to bid up items at ASI silent auctions.

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

Mother’s Day Celebration Feast

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What a wonderful coincidence that our 7th Annual International Conference and Scientific Symposium falls on Mother’s Day weekend! ASI planned a fantastic tribute to all of the wonderful mothers who are here with their families— a Thanksgiving-style feast at the historic Plimoth Plantation. A fitting event to honor the women of our Alström community, and of course “Mama Jan” is de-facto mother to ALL who have crossed our lives.

The weather has continued to cooperate, offering up a pleasant Sunday afternoon of sun and light breeze. The food smells so good, I am going to have to cut this short and simply share some photos of the event.

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A Team Luncheon

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The private room at East Bay Grille was a perfect fit for our group, and the staff was wonderfully accommodating. A nice taste of New England before the group headed out on the bus for Plimoth Plantation.

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Ask the A Team

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Always a high point of the conference, the “ask the A team” session is underway now— a chance for candid conversation between adults with Alström Syndrome, parents, treating physicians and researchers.

Shannon Caldwell leads the discussion, and it looks like most attendees have turned out for this special opportunity.

Photos from Boston trip

We just couldn’t wait to get some pictures up from yesterday’s Duck Boat tour!

ASI Day two: Parents go to class, kids go to Boston!

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Day Two of the conference is well underway, and we are delighted with the program that has been put together— informative sessions for parents and professionals, and fun activities for Alström children and adults alike.

By 8:45am we had a lobby full of folks ready to get on the chartered buses to Boston, and after a few hiccups with loading, the gang departed Plymouth for a Boston tour on the “Duck Boats”— authentic World-War-2 amphibious vehicles, refitted as tour buses for the Boston area.

From there, the group has headed to the Hard Rock Cafe… lunch for 150! As of this writing, the tour should be hitting the Science and Technology Museum, where staff there have put together a great program that should be of interest both to sighted and blind alike.

Meanwhile, the parents, caregivers and professionals have been stuck indoors on this sunny New England day, for some very worthwhile sessions to learn insights around hearing, cardiovascular and respiratory issues. Throw in some social networking and experience sharing, and we’re hard-pressed to figure out which group got the better schedule for today.

Families from around the world

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We have families from 16 countries attending our 7th Annual conference, including this nice group from Turkey chatting with Nevin Bengur here in the lobby.

The conference has a full plate of activites on the schedule for family members of all ages— day trips to Boston for sightseeing and Plimoth Plantation for an authentic 16th century pilgrim experience, family-friendly movies in the auditorium, the indoor pool for (adult-supervised) aquatic fun, and of course Chelsea’s Special Olympics for children under 12 (including the tots!)

More to come as the conference continues!

ASI is on-site and ready to go

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Families are starting to roll in to the 7th Annual Alström Syndrome International Family & Medical Conference— old friends have started getting reaquainted and new families are brightening the day (even the rainy parts)!

Volunteers like me will be updating the blog and striving to keep everyone informed of the conference as it goes on. Here are some tips for staying up to date:

• At the ASI registration desk, please take a moment to mark your home on our US or Worldwide maps… in that corner you will also find the day’s schedule posted on the big screen TV

• For the families staying here at the Radisson, check the in-room television channel 34 for reminders of activities and announcements of last-minute schedule changes

More to come!