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        So far our Annual Campaign has raised $4,140. Every single dollar raised will be matched by Southern Union Company in honor of Rachel Herschmann's 12th birthday and 5-year liver transplant anniversary. But our generous donor will match up to $10,000 in donations, which means we still have $5,860 to go! And we have to raise that $5,860 by February 28th to take full advantage of this awesome offer.

            Remember the little red bag that came in the last issue of Links4Life? Now is the time to drop a check into the return envelope that came with it!
        Alternatively, you may donate online right now by clicking on the Donate button on this page and following the steps on the secure donation page. (On the "Donation Made in the Name of" write "Annual Campaign" then the name of the person you would like to honor or remember.)  Every $1 you donate by February 28th will magically become $2, without any extra effort on your part. What a fantastic way to support our work of funding AGS research and education, and helping everyone with AGS build a better life.

Thank you for
Donating Today and
Raising Hope for Tomorrow!

Annual Fund Raising Campaign Extended
Now Enrolling for Study of Alagille Syndrome Liver Disease!
Bulletin Board Server Back Online - 6/4/10
The AGS bulletin board server is back online.  There will be another server down - probably on Monday 6/7/10.  Please watch the website for announcements. Thank you for your patience.
AGS Webmaster

AGS kids page including the slide show!
The Childhood Liver Disease Research and Education Network (ChiLDREN) (formerly the Cholestatic Liver Disease Consortium = CLiC) is enrolling children and young adults through age 25 years in the largest natural history study ever conducted of AGS. There are 16 sites in the U.S. and Canada enrolling for this study. Many sites now have travel funds for this year to help pay for travel and housing expenses of families from out of town. The goals of this study are to better understand the causes, risk factors and clinical outcomes in AGS liver disease. If you are interested in finding out more information about participating in this important study, please phone or email right away one
of the ChiLDREN sites (see contact information link). This study is supported by the National Institutes of Health.

CLICK HERE for contact information.

Thank you!
AGS Bulletin Board Server Update
Upcoming Events
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Links4Life Home Page
Click here to go the Links4Life page
Download the latest issue of Links4 Life - click HERE
AGS Virtual Walk 2010 - August 15th - October 15th
AGS Gear Now Available!!
It's time to start planning your participation in our 3rd Annual VW. Whether you stay completely online or branch out with a walk through the park or a backyard BBQ, all the information you need to get started is right here at your fingertips.
 
We've changed a couple things this year:
You don't have to register unless you are a Team Captain or you are a Walker who wants to be eligible for prizes.
Registration is $20 instead of $25.
Prizes are incentive-based and cumulative. Everyone who registers
and raises at least $250 wins at least one prize. A prize is earned for
each level reached. Prizes and levels include:
1. Raise $250, Win an Alliance AGS Awareness Bookmark
2. Raise $500, Win (1) + $10 Starbucks gift card
3. Raise $1,000, Win (1) + (2) + $25 Amazon.com gift card
4. Raise $2,500, Win (1) + (2) + (3) + Star paperweight
5. Raise $5,000 or more, Win (1) + (2) + (3) + (4) + Shooting Star trophy
 
The purpose of the Virtual Walk is to raise funds to support Alliance programs and publications. It is also a great way to increase awareness of AGS in your community! These funds will be used to publish our Links4Life newsletter, maintain our website, fund educational programs like the AGS Symposium and AGS Family Days, and help build our Julie Kelin Fund for Research and Education. This year we're making a big push to raise the last $5,000 we need to reach our
$100,000 goal that will enable us to award one or more AGS research grants! Thank you for helping move us closer to this goal. Together we can build a better life for our AGS Community!

Questions?  Email Joe Anderson or Cindy Hahn at the following addresses:

                          Joe:


                          Cindy:




 CLICK HERE to go to the Virtual Walk Home Page for more information including egistration forms and an information sheet.
Donate Now!
Make a secure, safe donation to the alliance right now with your credit card.  Click the "DONATE" button below to go to our donation page.
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Go to the AGS Gear hompepage
Order your AGS gear page safely
Quick Links
CHOP
American Liver Foundation
AGS in the News
iGive Where iLive Website
AGS Spotlight: Star of "Team Sophie Alina"
Sophie Alina McGuinness - enjoying a beautiful summer day on Grampa Fernald's boat in Lakeville, MA.  Sophie was diagnosed shortly after birth with AGS. She celebrated her 3rd birthday on May 13, 2009, with a dinosaur theme.  She lives in Midway, MA, with mom Andrea, dad Matthew and baby brother Gavin. Despite all the medication she takes daily and all the doctor's visits with bloodwork and tests, Sophie has a great personality, wonderful imagination, and is sweet, lovable and caring. She loves to be read to, to sing and dance, and to run.  Her favorite color is green, and she loves frogs, dinosaurs, and Thomas the train.  Other than having AGS, she is a typical little girl who brings smiles to everyone she meets.
Email Us
The Alliance
Join our Facebook Group! Click HERE.
alagille@alagille.org
The Webmaster
Check our Virtual Walk page for
team fund raising updates!
agswebmaster@alagille.org
If you shop at Thirty-One Gifts, 10% of your purchase amount will be donated to the Alliance!  Click the link below for more details. 

Limited Time Offer - offer ends February 24th!  Hurry!
Help the Alliance while you shop
My Thirty-One Site
Three Important AGS Surveys - please participate!
Get your copy of the latest Links4Life now!
The July-December 2009 issue of Links4Life is now available for download.  If you would like to download the current issue, please follow the link below to our Links4Life page.  Enjoy!
Share Your Opinion About AGS Research Priorities
The Alliance is very close to awarding our first $25,000 research grant! We'd like your opinion about the focus of research for the grant, as well as your thoughts about an AGS Patient Registry and Biorepository. Please take a few minutes to share your comments with us and help determine the direction of Alliance research priorities now and in the future.
 
            CLICK HERE to take the survey.
AGS YouTube Channel
Survey on AGS and Biliary Diversion Surgery
If you or your child have Alagille Syndrome (AGS) and have undergone biliary diversion surgery (i.e., partial external biliary diversion, ileal exclusion, internal diversion), the Alliance has put together a new survey just for you! We are interested in hearing about itching, xanthomas, what type of diversion was performed and when, and similar information. If you have considered biliary diversion for yourself or your child, but have not had the surgery, we'd like to hear from you as well. Follow the link below to participate in our survery:
CLICK HERE to take the survey.

Cast Your Vote for the Alliance on Facebook
Vote for us on Facebook!  Please follow the link below and cast your vote for us on Facebook!  Thanks for voting!
Check out our YouTube page! Click HERE.
AGS in the News
Big Yellow Friday Raises Money to Fight AGS
Read this story
Survey on Life with AGS
I am still writing my book about my experience as the parent of a child with AGS. My daughter Alaina is now 19 years and in her first year of college. While my book will focus on my experience as an AGS parent, I want to include insights and perspectives of other parents of AGS children, individuals with AGS, and relatives and close friends of those living with AGS. As I've worked on my book, I've found that I have more questions to pose to all of you living with AGS every day, whether as an affected individual or one who knows or cares for someone with AGS. That's why I've posted a second survey. Thank you for your time, for sharing your experiences, and for your honesty.

Cindy Luxhoj Hahn
Alaina's Mom
President & CEO, Alagille Syndrome Alliance
In the News Archives...
YouTube videos wanted!
The Alliance has a YouTube channel, but we don't have any content for it at this point.  Do you have anything news worthy or fun for the Alliance's YouTube channel?  If you do, please email the Alliance webmaster.  Thank you!
Email the agswebmaster:
Click HERE to take the new survey on Life with AGS
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.

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