Come get excited about The 9th Alström Syndrome International Conference in Galveston, TX by checking out this amazing highlights video from the 2016 Conference in Plymouth, MA!
News & Updates
PLEASE NOTE: THIS CLINIC WILL BE FOR THOSE 17 AND UP. WE NEED TO HEAR FROM YOU BY FEBRUARY 25!
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.
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.
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).
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.
If you are interested, please contact Robin by email at email@example.com OR call him at (207) 244-7043. Due to travel plans, email is best. We need to hear from you by February 25, 2018.
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.
COME TO THE CABARET
– 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
cometothecabaret.eventbrite.com 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
Dear Erica, Alstrom Family, Players and Friends,
APOLOGIES!! I am sorry to have been largely MIA since last Fall. As most know, Jan passed away back in September. Several months prior to her death, we lost her father, our beloved “Umpy.” Not long after Jan’s passing, our dog, “Maggie,” also moved on. Several very dear friends and near cousins also passed late in 2016 and in early 2017.
In April, I became aware that I seemed to be losing my own battle with dilated cardiomyopathy, a battle I have waged for 20 years. In early May I ended up in the ER with a heart rate of 30, which led to 10 days of incarceration in cardiac critical care. Along the way, I received a pacer/defibrillator implant, whom I have named “Albert” and, despite being a bit sore still, I am now thriving and feeling confident about being around for another 20 years.
Many, but certainly not all, of you are aware that for 35 years I, with Jan by my side, was the owner, manager, and producer of the Deck House Restaurant and Cabaret Theater, a largely summer seasonal enterprise that matched up well with my teaching career (Language Arts) and my early contributions to the Alstrom effort. The restaurant was staffed with young and very talented singers, dancers, and actors drawn initially from the talent pool here on Mt. Desert Island but later expanding to the whole country and, indeed, beyond to the world. Today, many of these actors have appeared on Broadway, sing with the Metropolitan Opera, or tour the world sharing their gifts. Those who attended the 2004 conference in Bar Harbor likely remember their visit to the Deck House, their time with the Players rehearsing “Across the Wide Oceans,” and their performance of some of that season’s material at the banquet
When Jan died, a number of these Players stepped up to the honor of performing at Jan’s memorial service in September, which coincided with the A-Team Retreat ASI hosted here in Maine at Camp Beech Cliff. It was so very fitting for the A-Teamers and some of their parents to have “front row” seats, and those in attendance became keenly aware that Jan had been a mother, a sister, and/or a friend to generations of her immediate family, her Deck House family, her Jackson Lab family, and, most especially, to her Alstrom Family.
As is common, many of these related branches of the family, could not attend, and one of my enterprising Players suggested the possibility of pursuing a 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 was born.
The Concert – In Honor of Jan D. Marshall to Benefit Alstrom Syndrome International – will be presented 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, all proceeds to benefit Alstrom Syndrome research efforts. As always, everyone should feel comfortable donating more, and, as usual, those in tough circumstances can attend for free. If you wish to contribute a silent auction item, you need to get it in the mail early this week. Send items to 14 Whitney Farm Road, Mt. Desert, ME 04660. If you cannot attend but wish to make a donation, you can use the options you will find on the Home Page at www.alstrom.org or send a check! USA donations are tax deductible!
HOPE TO SEE YOU AND LOVE TO ALL!
Come one, come all, and join us at Camp Beech Cliff, Mount Dessert Island, ME on July 3! We’ll be having a memorial concert and benefit in memory of Jan Marshall, our beloved founder and “Mama” to so many.
The 7:00 PM 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, all proceeds to benefit Alstrom Syndrome research efforts.
As always, everyone should feel comfortable donating more, and, as usual, those in tough circumstances can attend for free.
If you wish to contribute a silent auction item, you need to get it in the mail the week of June 18. Send items to 14 Whitney Farm Road, Mt. Desert, ME 04660. If you cannot attend but wish to make a donation, you can donate online or send a check! USA donations are tax deductible!
Save the date!
The 9th Alström Syndrome International Conference
May 2-6, 2019
Galveston, TX, USA
Venue: Hotel Galvez
Details to come!
Aspirin Social Innovation Award: Share & Vote Now
Aspirin Social Innovation Award 2016!
With this prestigious jury award the Bayer foundation honors every year the 5 most promising social impact innovators from health and food/nutrition related areas worldwide.
The Genetic Alliance is one of our 25 nominees in 2016 for The Platform for Engaging Everyone Responsibly (PEER) – congratulations to this success!
Now, the selection process is about to start and in the end 5 of our 25 nominees will be receiving an award with 20,000€ prize money each. Further information will follow shortly.