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

ASI Awarded PCORI (Patient-Centered Outcomes Research) Contract

Hello Everyone!It’s always nice to be able to send along really good news. Yesterday, the Genetic Alliance and ten rare disorder partners were awarded a large contract by PCORI (Patient-Centered-Outcomes-Research-Institute). Although we often measure progress by the drop, this is a whole bucket, and it’s making a very big splash too! We will be in touch soon on how YOU can contribute to the success of this project. For now, enjoy this gift of recognition and reward for all that we as the Alström Family have achieved over the years.Our very best wishes to each and every one for the Holidays and for the New Year!
Love to all!

It’s finally time!!!

Have Lobstah Fun at the 2013 ASI Conference!

We are extremely excited that the 7th Alstrom Syndrome Family and Medical Conference is starting up on May 9th!, just a few short days away! We are looking forward to seeing old friends, making new ones, and enjoying all the goings on we have planned in America’s Home Town, Plymouth, MA.

If you’re attending the conference, we’d like to offer some quick reminders…

  • Don’t forget your Damlayas! Drop by drop we form a lake!
  • We’re always looking for goodies for the silent auction! This is a great way to help raise funds for ASI, and have a good time to boot! Items local to your area are always fun, as are artwork or hand-crafted items!
  • Take some time to preview the area around this year’s host city at www.visit-plymouth.com!
  • Plan your conference attendance ahead of time by checking out the Full Conference Agenda and Schedule of Activities online!

We’ll see folks next week! Get ready to “Have Lobstah Fun”!!!

2nd Annual Angling for Alstrom is August 4th!

Attendees of the 1st Annual Angling for Alstrom Bass Tourney

The morning kickoff in 2011!

Gina Denbow has done it again. While being a full time mother and teacher, she has managed to pull together one of the highlights of my summer: The 2nd Annual Angling for Alstrom bass tournament in Woodlands, ME!

As an avid fisherman and a volunteer for Alstrom Syndrome International, this is an exceptionally exciting event for me. It brings together so much of the community, offers so much for so many, and ends with a chow enough to make a king happy! All this while raising money to help ASI. What could be better?

This is the second tournament that Gina has planned, registered, and worked with Maine state tournament regulations to accomplish. So much more than a fishing tournament, the event offers a silent auction, face painting, a canoe challenge, scavenger hunt, fun with geocaching, and an incredible bake sale. It’s the kind of event summer was made for. And there’s more…

Kate’s Kids, headed up by Gina’s daughter and our friend Kate Denbow, insures that children will also have a chance to demonstrate their angling skills, with kids vying for trophies, medals, and the chance to be number one for the day! In addition, new this year, the Cardboard Boat Race!!!

Last year’s tourney was an amazing time, and everyone went home with a great sense of accomplishment from a day well spent. With proud sponsors such as the Boston Red Sox, Cabela’s, Old Town Canoe, and the hosts of the tournament, The Maine Blade Runners, this second tourney is sure to be a kick in the pants!

The tournament and festivities will take place on Grand Falls Flowage, Woodlands, ME. Contact information is available on the event flyer.

Take a look at the flyer for the tourney, and rules for the Cardboard Boat Race!

This is gonna be awesome!

2013 ASI Family Conference and Scientific Symposium

7th ALSTROM SYNDROME INTERNATIONAL FAMILY CONFERENCE AND SCIENTIFIC SYMPOSIUM

The 7th Alstrom Syndrome International Family Conference and Scientific Symposium will be held in at the Radisson in Plymouth, Massachusetts, USA.   Families and professionals from around the world will attend the Conference. Medical professionals and scientists will hold Symposia on Thursday, May 9th and Saturday May11th, 2013.  The full conference for families and professionals will begin with a welcome reception on Thursday evening, May 9 and continue through Monday morning May 13, 2013.  Registration is required for all participants.

  • We are expecting families from 42 States and 15 different countries in Europe, South America, and Asia.
  • US dollar, credit cards, and travelers checks are widely accepted.  Currency exchange (Euro only) is available at a nearby bank.
  • Activities for children are scheduled throughout the conference, and a Mother’s Day Feast is planned for all on Sunday at Plimouth Plantation (www.plimoth.org).

About the Location and Venue:   Plymouth (also known historically as Plimouth and Plimoth) holds a place of great prominence in American history, folklore, and culture.  It is the site of the colony founded in 1620 by the Pilgrims who arrived on the Mayflower and held the first Thanksgiving.  Plymouth is located approximately 40 miles (64 km) south of Boston.  As one of America’s first settlements, it is well-known in the United States  as an historic site (www.seeplymouth.com )

To make your hotel reservations, call 800-967-9033 (toll free)and reference the date (May 9-13, 2013), hotel property  (Plymouth Radisson) and Alstrom Syndrome International.    If you prefer to speak directly with a front desk agent in Plymouth, call the 1- 508-747-4900 number and hit “0” and ask for in-house reservations.    Inquiries can also be sent to info@radissonplymouth.com . We expect to fill the hotel, so make hotel reservations early! The discounted rate will apply both five (5) days before and five (5) days after the actual conference dates.

General Information

  • Average Temperature in early May:  44-680 F  (7-200C)
  • Taxes: Massachusetts Sales Tax is 6.25%
  • Time Zone: GMT-5 hours
  • Attire/Dress Code for the Conference is casual.  Wear comfortable shoes and dress in layers.  Bring a warm jacket for outdoor activities and a bathing suit for the hotel pool.

Letters of Invitation and visa application to attend the ASI 2013 Conference:  We can send you an individual invitation letter to help you obtain a visa.  Please contact ASIRobin@hotmail.com  and include the following details: full name (as printed in your passport), full postal address and passport number.

Visa requirements: Please check that your passport and any visa requirements for travel to the USA are current.

Transportation from Boston Logan Airport: Plymouth & Brockton bus line (http://www.p-b.com/ ) offers coach service every hour between Boston Logan Airport and Plymouth.  At Logan, buses depart each airline terminal on the lower level OUTSIDE the BAGGAGE CLAIM areas, at the sign that reads “Scheduled Buses” or “Bus Stop.”   Plymouth & Brockton does not accept reservations. Tickets may be purchased in advance but do not guarantee a seat on any particular date or at any specific time.  Tickets purchased when boarding the bus at Logan are cash only. The fare is $20.00 one way and $36.00 round trip.

Certificate of Attendance: All attendees will receive a Certificate of Attendance

Child Care: A Tot Room (ages 3 and under) will be located on-site during the conference sessions. The room will be equipped with toys and activities, as well as areas for napping.  Cribs are available on request.   

Older children:  Game rooms and movies will be available during the evening hours. The “Carl-Henry”, our traditional hospitality suite, will be available for family use to stop in for a cup of coffee or to relax during the meeting.

Family Hospitality Suite: The traditional “Carl-Henry” hospitality suite will be available for gathering throughout the conference.

Internet Access: Free wireless Internet access is available at the Radisson.  There is a public computer and printer available in the lobby.

Laundry facilities:  Coin operated laundry facilities are available on-site at the Radisson.

Liability and Insurance: Alstrom Syndrome International and the Conference Organizers cannot accept liability for personal accidents or loss of or damage to private property of participants and accompanying persons. Participants are advised to take out their own personal travel and health insurance for their trip.