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!!!

Denbow Family Organizes Fishing Tournament by Gina Denbow

Angling for Alstrom Logo

Maine Blade Runners 1st Annual ASI Benefit Tournament

Fundraising…a scary adventure and A LOT of work, but worth it in the end if someone can benefit.

About 5 years ago I had a vision of organizing a bass fishing tournament to benefit ASI. I mentioned it to my husband, since he is a member of a bass club in Maine, but that was as far as it went. A few months ago I started talking about it again. This time after the talk, I jumped in and contacted the president of the club. After several emails we agreed to meet face to face to discuss details and are now on the road to the “1st Annual Angling for Alström” bass fishing tournament to benefit ASI.

I had no idea how much work was involved in organizing an event of this nature. I have spent weeks writing letters for donations and letters of invitation to participate in the tournament. I have made lists upon lists of businesses, companies, organizations, big and small, that I want to be sure to contact. I am begging and pleading with friends and family to cook, sponsor and volunteer on the day of the event. It’s a lot of work, I won’t lie, but I keep thinking of the end product and that is my drive. If I can help ASI in any way, then that is my mission. ASI is like my family and I would never dream of telling my brother that I couldn’t help him, so how can I not help my AS family?

The Angling for Alström tournament is scheduled for July 3. My vision includes the main tournament that will consist of a 2 person team/boat. Each team will pay a $125 registration fee that will include their registration, launch fee, 5 free raffle tickets and a BBQ dinner at the end of the day. The tournament will pay out 80% to the winning team and 20% of each fee will go directly to ASI. (Hopefully the winners will find it in their hearts to donate back to the cause.) Throughout the day, there will be games and activities for children, and a separate fishing derby, “Katelyn’s Angling for Alström”, for any child that would like to experience fishing. My dad and a family friend have agreed to captain their party boats throughout the day taking children out for an hour of fishing. Others have volunteered to weigh and measure the fish as they are caught so the children can record their daily catches. I have been contacting locals to sponsor this particular event so each child will receive a t-shirt with the tournament logo and a prize for their catch. Katelyn is very excited about this part of the fundraiser, as this is her baby, she had the idea and her father just helped her fine tune it.

I have been contacting larger businesses for donations for a silent auction and items to sell tickets on prior to the event. I also have contacted a media crew in hopes to have the event covered or at least a story in the paper. Awareness is half the battle when fund raising for something that so few know anything about.

As you can see, my husband and I, along with the Maine Blade Runners bass club are very busy, but it will all be worth it when we present a cheque to Alström Syndrome International. I challenge you to organize an event. Remember, “Drop by drop, we form a lake”.

Gina, Jeff, Katelyn and Cody Denbow

Full Schedule (Adobe Acrobat PDF)

(Full details on the Tournament can be found at www.themainebladerunners.net/ASI-Benefit-.html)

AMERICA’S HOMETOWN TO HOST 2013 FAMILY CONFERENCE

Plymouth, Massachusetts (www.visit-plymouth.com) has been selected as the site of Alström Syndrome International’s 7th Family Conference, Medical Research Clinic, and Scientific Symposium that will be held May 9-13, 2013 at the Radisson Hotel (www.radisson.com/plymouth), so SAVE THE DATES! By holding the conference somewhat earlier than in past years, we hope to capitalize on glorious spring weather, early season rates, and having more of the town to ourselves. Plus, we can all help one another celebrate Mother’s Day! Leave the planning to us.

Plymouth was an early English settlement founded in 1620 by those who came to be known as the Pilgrims. A full scale replica of the Mayflower II, which brought these hardy settlers to our shores, is docked within a very short walk from the hotel, as are Plymouth Rock and a number of fine museums celebrating these early years in our colonial history. Plimouth Plantation, a functioning live museum complete with period dress, period speech, and even rare period animal species, is nearby.

Although Plymouth is an incredibly popular destination, positioned halfway between Boston and Cape Cod, the town retains a real sense of intimacy and hospitality. The Radisson and its entire staff have already been great to work with, and we are confident the “amenities” of both the venue and the town itself will address some of the concerns raised in the past. A free town trolley stops in front of the hotel, there are shops and restaurants a stone’s throw from the entrance, and the indoor pool (as well as the hot tub and the sauna) is bound to be popular.

So o o o o, the suspense is ended! Thanks to everyone for their input. Check the ASI BLOG at alstrom-families.org/blog/ regularly for more details as they emerge. However, here are some basics: Logan Airport is under an hour away, and there’s even a bus from the airport to Plymouth; rooms will only be $114.00/night (plus taxes); there are two restaurants on-site, and this venue also specializes in banquets. The ocean, deep sea fishing, whale watching, and pirate reenactments are literally across the street. Most important of all, the rest of the Alström Family will be there. See you soon!