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!
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.
This is a reproduction of Jan’s Story, found on the Bangor Daily News.
SOMESVILLE, ME – Jan Davis Marshall of Somesville, ME died on September 6, 2016 , leaving her wide network of family, friends and the genetics research community at Jackson Laboratory stunned by her passing. Her dynamic life began in western New York on February 17, 1948 and was packed full of extraordinary energy and accomplishments. She was the daughter of the late Thomas J. and Betty (Walker) Davis of Williamsville, New York and Somesville, Maine.
She is survived by her husband and soul-mate Robert P. Marshall, beloved daughter Erin (Richard) Cyr, her grand-daughters Madison and Lily of Carver, MA., and sister Susan (Paul) Belanger of Madison OH. Many others, including a legion of Deck House Players considered her to be friend, sister or mother. All will remember her passion for life, her love of great food and wine, and the joy she found in sailing the waters of Mt. Desert Island with her precious grandchildren.
Jan graduated from Williamsville High School and from Hartwick College in Oneonta, New York before moving to Mt. Desert Island with Rob in 1970 to start her career as a Research Assistant at the Jackson Laboratory and was a Senior Professional Assistant and Genetics Coordinator for Alström Syndrome Studies at the time of her death.
During her 46-year career at Jackson Laboratory she contributed to many genetics research projects as a valued team member. It was her research on Alström Syndrome, a rare and very serious inherited disease, that captured her passion and became her most important legacy, making a huge difference in the lives of Alström patients and families around the world.
Jan located and worked with families of children afflicted with Alström, leading to continued research which allowed the discovery of the disease gene. She developed a deep and personal commitment to help Alström children and their families. In 1998, she and Rob founded Alström Syndrome International (ASI), a charitable foundation dedicated to treating and curing the disease. She authored numerous scientific articles and The Alström Syndrome Handbook which have greatly increased the worldwide understanding of this disease. A colleague said it well: “Jan’s spirit is in her life’s work and will forever stay with us”. She was Chair of the ASI Scientific Advisory Board.
Her legacy survives in the hundreds of families in 58 countries that now have been helped by ASI and the continuing research on the disease. She has touched many lives and remains an inspiration to all who knew her. Her lifetime awards include the Galileo Galilei Surgical Theater Medal for Scientific Achievement by the University of Padua, Italy (2003) and the Williamsville Education Foundation Wall of Fame Award for Distinguished Service to Science (2008).
A tribute to her life will be held in the outdoor amphitheater at Camp Beech Cliff, Beech Hill Rd, Mt. Desert on Friday, September 16, 2016 at 4 pm (moving indoors if weather demands). Casual and comfortable clothing is appropriate.
Tax deductible memorial contributions in Jan’s honor may be sent to Alström Syndrome International, 14 Whitney Farm Road, Mt. Desert ME 04660 in support of this family-focused non-profit organization. (www.alstrom.org)
Condolences may be expressed at www.jordanfernald.com.
Published in Bangor Daily News
Jordan-Fernald Funeral Homes
Earlier I had indicated that plans to celebrate Jan’s life would be postponed until after both the A-Team Retreat and the GBMC Clinic. However, in part because so many A-Teamers and a number of Alstrom parents will be here next weekend and because many of our Deck House friends are nearby, and certainly because our immediate families are here and can stay around for awhile, and because so many of Jan’s friends and colleagues at JAX are feeling sad, we have made the decision to have a service for Jan on Friday, September 16 at 4:00 PM at Camp Beech Cliff in/at their gorgeous outdoor amphitheater. Our feeling as a family is that nothing would please Jan more than to have her wonderful A-Teamers in the front row as it were. Same for me!! The setting can be appreciated at www.campbeechcliff.com.
Also, we know how very many of you from all around the globe can not be here in person. This morning at a meeting with the officiate for the service, our dear Heather Cox suggested that if you wished to participate, you could do so by writing your thoughts down and we could publish them for everyone to have with them now and in the future. Phyllis will, of course, see that we have enough Braille copies!! Heather’s direct e-mail is firstname.lastname@example.org. It’s a good idea to copy Aaron as well at Aaron.email@example.com. And Phyllis at firstname.lastname@example.org.
Music and Nature have been a huge part of our lives. We will have both in abundance on Friday. Casual and comfortable dress encouraged. At minimum, PLEASE, at least as many smiles and laughter as tears! There will be some refreshments following the ceremony, and our evening schedule for the Retreat will resume.
My love to all!