Conference Registration Now Available!

Conference Registration Is Now Available

Pay Now: Early Bird Special! Register by January 31, 2018 and receive a 10% discount on registration costs!

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Pay Later: You can also make registrations for paying later. The Early Bird Special does not apply to this registration method.

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

PLEASE NOTE: THIS CLINIC WILL BE FOR THOSE 1 -12. Anyone is welcome! Information and consults will be in English. WE NEED TO HEAR FROM YOU BY July 20th!

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 CONSIDERAIONS: Please be aware that the resources of both ASI and GBMC are limited. Sadly, at present we can only accommodate 8 participants per Clinic, and priority is extended to NEW attendees. 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. “Veterans” of previous clinics SHOULD let me know if interested.

WHO: For this particular Clinic we are seeking younger pediatric participants (aged 1-12) accompanied by a parent or 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: September 13 – 16. The clinics/consultations will take place on Friday and Saturday, September 14 and 15, so participants and any care-givers will arrive during the day on Thursday, September 13 and depart in the morning on Sunday, September 16.

WHERE: Sheraton Baltimore North Hotel 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, 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 will have your own examining room, and the various docs will come directly to you. Nice change for most!

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 and to/from GBMC. Rooms 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 all 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 OR call him at (207) 244-7043. Please –  email (NOT facebook!!!) is best. We need to hear from you ASAP but no later than July 20!!

Alström Syndrome in the News

Rhythm Pharmaceuticals Announces New Topline Clinical Data from Ongoing Phase 2 Basket Studies Evaluating Setmelanotide in Rare Genetic Disorders of Obesity

  • Further Improvements Observed in Bardet-Biedl Syndrome Patients; Initial Proof-of-Concept Data in Alström Syndrome Demonstrates Significant Weight Loss and Decreased Hunger
  • Rhythm Plans to Initiate Combined Pivotal Phase 3 Trial in Bardet-Biedl Syndrome and Alström Syndrome in 2018
  • Preliminary Data in Patients with POMC and Other MC4 Pathway Heterozygous Deficiency Obesities and POMC Epigenetic Disorders Demonstrate Clinically-Meaningful Reductions in Weight and Hunger

Read the full press release on Rhythm Pharmaceuticals’ website.

Update on the July 3 Memorial for Jan Marshall

Dear Friends and Neighbors,

Many, but certainly not all, of you are aware that for 33 years I, with my wife Jan by my side, was the owner, manager, and producer of the Deck House Restaurant and Cabaret Theater, a largely summer seasonal enterprise, first in Bass Harbor and then in Southwest Harbor. That enterprise matched up well with my teaching career at MDIHS (Language Arts) and my early contributions to supporting Jan, a researcher for 46 years at JAX, in her efforts with Alstrom Syndrome International (ASI), a 501 (c) (3) charity established to treat and cure Alstrom Syndrome, a horrific and rare genetic disorder that impacts every cell, every organ, and every system in an affected individual’s body. 

The restaurant was staffed with young and very talented singers, dancers, actors, mimes, story tellers and puppeteers, drawn initially from the talent pool here on Mt. Desert Island but later expanding to the whole country and, indeed, beyond to the world. Many will remember the early days with Laurie Beal, Susie Homer, Randy Reed, Susan Grindle, Lajla Stromholt, Barry Fernald, Jeff Newman, Michael Kelly, Robert Salsbury, Jackson Gilman, Andrew Periale, Justine Barcley, Marianne Miro and
many more. Today, a great many Players are or have appeared on Broadway, sung with the Metro- politan Opera, or toured the world sharing their gifts.

When Jan died this past September, a number of former Players (Laurie Beal, Annie Leonardi-Merchant, Jackie Bachman, Frank Bachman, Valerie LaPointe, Amy Gwinn-Becker, and Danny Williams) stepped up to the honor of performing at Jan’s memorial service held in the Amphitheater at Camp Beech Cliff. John Tercyak, a longtime friend and supporter, also performed and provided accompaniment. Those in attendance included many Alstrom patients and families, Jan’s colleagues from The Laboratory, our nuclear family members, and many, many friends and longtime admirers from the community-at-large.

As is common, many of the related branches of this large, all-inclusive family, could not attend, and one of my enterprising Players suggested the possibility of pursuing a Deck House reunion, for which Jan herself had advocated the past few years. Based on an enthusiastic response, the possibility and then the likelihood and then the reality of a Benefit Concert to honor Jan and to support ASI’s research efforts was born.

– In Honor of Jan D. Marshall to Benefit Alstrom Syndrome Inter- national – will be performed Monday, July 3 at Camp Beech Cliff at 7:00 PM.

The concert will be preceded by some hors d’oeuvres and a cash bar beginning at 5:30 PM which also affords time to peruse and place bids on a number of silent auction items. Tickets to attend are $25.00. They are available in advance at or at the door. All proceeds will benefit Alstrom Syndrome research efforts!

4th Alstrom Syndrome International Family Conference – May, 2004 – Bar Harbor, Maine US

HOPE TO SEE YOU ALL THERE! [Camp Beech Cliff, 264 Beech Hill Road, Mt. Desert, ME USA]
Thanks for the memories!

Rob Marshall and the Deck House Players