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.

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!