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!
  • 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


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 (

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 ( )

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 . 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  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 ( ) 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.

To All ASI Families and Friends

You’ve probably been wondering why you’ve not received an ASI newsletter lately, not since the spring 2011 issue. You may be wondering if the ASI newsletters will still be published. Well, the Foor family hasn’t quit our publishing commitment with ASI for the newsletters, we’ve just been extremely busy and the summer months have just flown right by us. In addition, we didn’t receive hardly any news, especially from families, to be published in a summer newsletter this year. As many of you may know the Foors have been transitioning moving from Ohio, USA to our new home now in Kentucky; finally getting settled into our new location. With that being said, we along with the ASI “experts” have decided to combine the summer and fall issues of the ASI newsletter for this year. WE NEED ALL YOUR HELP! We are STRONGLY ENCOURAGING ALL FAMILIES to contribute your stories/articles/pictures/etc… You can e-mail Helen at: and you can e-mail Brittany at: (please note Brittany’s email change). We want to hear how things are going with all affected by AS. Your ASI family wants to know your latest successes/accomplishments/achievements or even your happening in battling AS your struggles/challenges as this is our way of connection between ASI conferences. THE DEADLINE FOR SUBMISSIONS IS OCTOBER 8, 2011. For those who had submitted news/pictures for the summer newsletter, we still have those and will certainly include those in as well; however, feel free to send updates on news/pictures if you so desire to do so. We hope to see you all featured in this upcoming newsletter! Hope this finds everyone doing well.

Best Wishes!
Helen Foor, Editor
Brittany Foor, Editor-In-Chief
Kentucky, USA

Alström Syndrome International needs your help!

If you have a Facebook account, this message is for you! ASI has entered a contest sponsored by Vivint, Inc for a chance to win. We need votes of endorsement from you and your friends, families, networks! Now in Phase 2, ASI qualifies for matching any donations made by individuals up to $2,500. We can also qualify to win $100,000. You can vote once per day. Please involve everyone you can think of to help the Alstrom Syndrome cause!

Please take a minute to endorse Alström Syndrome International. We need the help of EVERYONE!!

Here is how to do it:

Alström Syndrome Turkey and ASI to Co-Host Family Meeting

Thanks to the generosity of the Coca-Cola Foundation and to a matching personal contribution by its Chairman, Mr. Muhtar Kent, ASI has been able to partner with patients, families, treating physicians, and researchers in Turkey to host a Turkish Family Meeting this June 29-July 2 in Bolu, Turkey at Abant Izzet Baysal University. Dr. Koksal Ozgul, ASI Board Member, Dr. Selma Duzenli Gepdiremen, a member of ASI’s Scientific Advisory Board, and Aysegul Guzel, a doctoral candidate who has worked on Alström Syndrome at the Jackson Laboratory, have served as co-organizers of the event. We thank them for their hard work and for “making it happen.” For those who are interested, a complete agenda can be found on the web page under conferences. Nearly all of the sessions will be conducted in Turkish, but, as always, anyone wishing to attend may do so! If interested, contact Robin at

ASI SE Regional Family Conference 12/02/11

Hello Everyone,

I was all set to “mail” this out to you several weeks ago, and then all that death and destruction was caused by all those tornadoes down your way, so I held off. Our thoughts, hearts, and prayers have been with you. But, now, I hope it’s time to look forward to something positive!

Starting back at the big conference in June, 2010 there was talk about the possibility of having a regional get together for those in the southeastern part of the country, especially since Georgia, Helen, and the Unicoi Lodge were/are so centrally located and everyone could drive. Since then we have learned of 6 new families “in the area,” and so, with sufficient interest, we’d love to go for it. Here’s the deal….

I’ve negotiated a group rate for rooms and meeting space at the Unicoi Lodge for December 2-4, 2011. They will let us have those big, comfy 2 double bed rooms for $89.00/night which will include breakfast for 2 adults. The real little kids can eat for free, and there will be a reduced rate for the 5-12 year olds. They’ll give us ½ price on our own dining room and dedicated meeting space where we can set up our own hospitality suite for gathering. For those with more people, there are loft rooms with two double beds and two twin beds up the steep ladder and into the cozy loft space. We can all be grouped in one building, or, for some, it might be cost effective to be off-campus in a cabin.

The town, for those who don’t know it, is full of fun and shops, all based on an Alpine Village theme. The Lodge itself is in the midst of Unicoi State Park, one of the crown jewels in the Georgia State Park system, and a noteworthy destination under any circumstances.
We will NOT have much formal structure, but Jan, Phyllis, and I, at the very least, from “Headquarters” will be there, and Jan will bring all of her data/info on her trusty computer so we can answer questions that arise or show you what’s happening on the research front. But the real purpose is to have fun together in a relaxed environment where EVERYONE, including this particular hotel staff, is part of the Alström Family.

Another plus for those on this list with young children is that a number of A-Teamers (adults with the syndrome) will show up, and they are a fantastic source of both inspiration AND practical knowledge and insights into the reality of living with AS.

Amongst you are those who have endured the loss of a child. Nothing can take away that pain. However, there can be real healing in being with those who have shared that unique loss and certainly in being with people, old friends and new, for whom no complicated explanations are necessary. All hugs are free – readily given and gratefully accepted.
I would love to get a preliminary idea as to numbers, so please let me know what you think. If you are definitely in, even if you have already shared your enthusiasm, please let me know. AND, I will let you know when things are nailed down with Connie Taylor at the Unicoi so that you can call and make your reservations at the preferred rate.

As always, this invitation will be open to everyone everywhere, and we’ll post it to the List Serve, put it on the Blog, and put an article in the next issue of Panoramic Views, but, realistically, y’all, I’m going to start brushing up on my drawl now.

A reminder – I am transitioning to a new e-mail,, so please use it and delete my and/or accounts. Feel free to write or call (207) 244-7043 with any questions!

Love to all, and we hope to see you in December!


Rick Herring contributed the following reply:

Robin and the rest of the Alstrom family,

Sounds like a big time down south. I think it’s great for you to sponsor these regional get-togethers where the kids can see each other more than once every 3 years, because to me, that is the most special thing for the kids of anything y’all (work for your drawl there, Robin) do. As you know, 3 years is a long time for any kid and for these special children it is even longer. I can’t emphasize enough that no one else in the whole world knows what these kids are living with except another kid with the same challenges. Parents are great and medical support is great, but there is NOTHING, ZIP, ZERO NADA, for them like meeting some other kid who knows what they are thinking and feeling. There is just no substitute for it and I encourage everyone who can possibly make these meetings to sacrifice whatever it takes; time, money, fear or anything else that is keeping you away, and do this for your children. They will thank you with their glowing, smiling, laughing faces as they meet new friends and re-meet old friends who are just like they are.

Rick Herring
P.S. I hope it came through how important I think this is for your children.
If it didn’t, READ IT AGAIN!!!