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Links to our symposium pages.  Please check the 2014 Symposium page for more details about next year's event. 

We put together the following ALGSA Symposium Frequently Asked Question list.  If you have a question that you don't see on the list, please contact us with the contact form on this site.  We will get an answer to your question as soon as possible. 

ALGS Symposium FAQ

What is an ALGS Symposium?  An ALGS Symposium is a large gathering of ALGS families and ALGS doctors that occurs once every three years.  The main purpose of the symposium is to get ALGS families together and offer as much up to date, pertinent information as possible to those families.  The ALGS doctors give presentations on different topics throughout the symposium.  Families can decide which information sessions they want to attend to get the information most important to them.  There are group gatherings as well including a fun get together on Saturday night with a DJ and a silent auction.  We include a keynote speaker, opportunities for families to socialize informally, question and answer sessions with young adults and parents, private consultations with ALGS doctors, blood draws for genetic testing and more.  It is an experience that every ALGS family should enjoy at least once.  

When did the ALGS alliance start holding symposiums? We started holding symposiums in 1999.  The first symposium was in Portland, Oregon.  Since our first event, we have hosted symposiums in Philadelphia, Atlanta, San Francisco, Chicago and now Washington D.C.

Why do you move the Symposium around to different cities? We decided a long time ago to change the site of each symposium to reach families and doctors in different regions of the country.  We hope that by moving the symposium site around the country we will generate more awareness of and interest in ALGS.  

How much does it cost to attend an ALGS Symposium?  The costs per family can vary depending on how far away that family has to travel.  Unfortunately, the ALGS Alliance can't cover travel expenses.  We do try to negotiate the best room rate possible for families at the hotel/conference center where the symposium is taking place.  We cover all the group meals at the symposium and provide refreshments at break times. 

What if I can't attend an ALGS Symposium, but I want to see the presentations?  We have been working towards providing a live webcast of symposium presentations for many years.  2014 is the year that we are going to finally realize that dream.  We will be providing a live web cast of the event and will post all the video on our YouTube channel after the event. 

What if I can't attend the symposium, but I still want copies of the doctor's presentations to view on my own?  We copy all of the doctor's presentations on jump drives and give them out at the symposium.  If you know that you will not be able to attend the symposium but still want a copy of the presentations, please let us know ahead of time so that we can plan accordingly to make sure you get a copy.

What if I can't attend the symposium, but I still want a symposium t-shirt?  We will have t-shirts available for purchase on our website after the symposium.  

How do you come up with the symposium logos and themes? The logos and themes of each symposium are decided by the ALGS Alliance's board of directors.  The logo for the 2014 symposium was created by Alaina Hahn.  Cindy Hahn came up with several themes and put them to a vote by the Alliance's board of directors.  We never know ahead of time what the theme is going to be, but somehow the theme reveals itself in plenty of time for the symposium.

What are the presentations at the symposium going to be about? The presentations for the next symposium have not been determined yet.  However, we usually have an ALGS Basics 101 presentation (gives new ALGS families a good background on the disease), something about quality of life, something about growth and how to improve nutrition, something about liver transplants and follow up from transplants and something about issues with ALGS kids in school.  

If I am attending the symposium, what do I do with my ALGS angel?  The alliance provides child care during the event so that parents can attend information sessions without interruption.  We use Kiddie Corp.  We have been using them for several symposiums now, and they have proven to be reliable and really awesome for the kids. 

Do I have to pay for the consultations with the ALGS doctors?  No.  The doctors volunteer their time for the event.  

Why is the next symposium taking place in Washington D.C. in 2014?  As noted earlier, we move the symposium around the country to different cities to increase awareness about ALGS and to reach more families.  We picked D.C. because it is an east coast city which seemed appropriate after a conference in the midwest (Chicago) in 2011. 

How do I register for the symposium?  We will have online registration available for the symposium starting in January of 2014. Check this page and the Symposium 2014 home page for more details.  

Why is the symposium always in June? We try to balance time available for families to attend (ie. no school for the kids) with warm but not too hot weather (ie. not so itchy).  June seemed to be a good compromise as far as warm weather and kids with no school.  We do our best to hold the symposiums in venues where there is a lot to do for families outside of just attending the symposium.  Hopefully that allows families to plan their summer vacations around attending the event. 

Why is the symposium held at a hotel/conference center instead of a university?  We tried holding a symposium at a university (Philadelphia 2002), but the venue was just not comfortable for families.  Holding the event at a hotel/conference center allows us to keep things close together, provide nice accommodations for families and is simply more efficient.  

 

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The information presented on this web site is provided for information purposes only. This information does not constitute medical advice and it should not be relied upon as such. The Alagille Syndrome Alliance does not engage in the practice of medicine. Under no circumstances, does the Alagille SyndromeAlliance recommend particular treatments for specific individuals, and in all cases recommends that you consult your physician before pursuingany course of treatment. 

The information presented on this website is provided for information purposes only.  This information does not constitute medical advice and it should not be relied upon as such.  The Alagille Syndrome Alliance does not engage in the practice of medicine.  Under no circumstances does the Alagille Syndrome Alliance recommend particular treatments for specific individuals, and in all cases recommends that you consult your physician before pursuing any course of treatment.

 

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