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 ASIRobin@hotmail.com.

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, ASIRobin@hotmail.com, so please use it and delete my acadia.net and/or prexar.com accounts. Feel free to write or call (207) 244-7043 with any questions!

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

Robin

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!!!