My boy Kristjan were diagnosed with alagille syndrome last summer, he is 8 years old and getting worse now. He has pulmonary stenosis witch is unpredictable, and have often go to hospital cause of puls is 200. He got hige liver bile. He have had 5 ear surgery.He is allso diagnosed with ADHD, autism and wery bad undarstanding. Hes itch is wery bad now. We live in Iceland and I havent heard any one ells have it but me and him and our doctor is not taking mutch care of us. All I know about our condition is help from alagille alience. If they werent i would be allalone fighting for him. Love Audur and Kristjan
I was made aware of ALGSA through my research collaborator Dr. Kamesh Surendran at Sanford Research. The Surendran lab studies kidney development and disease with emphasis to Notch signaling pathway. Mutations in Notch receptor and it’s ligand Jagged result in Alagille Syndrome. ALGSA board members not only attended the Annual Sanford Research CoRDS Rare Disease Symposium, they were here to interact with the Surendran lab. They also donated valuable skin and blood samples to help the research work. They are an impressive group of patients and family members whose mission is to provide excellent support and care as well as engage with the research community. They actively seek out researchers all around the world who work on Alagille Syndrome and underlying biology of the disease. My interaction with the ALGSA members changed me and I strongly believe it will have a long lasting influence on my research work. It has given me a new perspective, inspiration and motivation. I cannot thank the ALGSA members enough for their visit and their time, they are wonderful people and a fantastic non profit group.
I am a post-transplant Alagille patient. I struggle with every day difficulties to do Alagille but work my hardest to remain healthy and happy. It is a powerful and life changing disease.
The Alliance provides hope and community to struggling families.
ALGSA is an organization of passionate board leaders and staff dedicated to their mission: "Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome."
I'm the mother of teenage twins, one who has ALGS. The ALGSA was a lifeline for me when the kid were infants. Finding information about ALGS is very difficult and searching on the internet led to many scary unknowns. Thank you, ALGSA, for providing relevant information to families and for all you've been doing for families for the last 25 years!!
Our son Gabriel was diagnosed with Alagille Syndrome in July of 2013 at 3 months of age. This diagnosis was extrememly devistating to our family as no one had ever heard of the syndrome or have known other kids and families dealing with the same issue. The Alliance quickly provided resources on the disease as well as a connecting point with other families dealing with the struggles of Alagille Syndrome. We were very fortunatne to attend the symposium to meet other families as well as hearing from the leading doctors and researchers in the field. The Alliance provides a great resource for families to collaborate on treatments, medical concerns, and medical research. The alliance has done a fantastic job of developing fundraising activities to further the deveopment of research in attempt to cure this disease.
Ive grown up with Alagille Syndrome and until I heard of the Alliance I was so alone and isolated. The Alliance connects you to information and people and gives you more support than you can imagine. It’s an incredibly dedicated team of people that believe in vision of supporting and caring for people. I live in India, a country with so little awareness of rare diseases and even less patient support. The Alagille Syndrome Alliance gave me the support I never had. That’s how I got into working with the Board of Directors. I wanted to give back to them and to my ALGS family.
My daughter, Kassidy, was diagnosed on March 10, 2006, with stage IV neuroblastoma when she was 6 years old. She has undergone several doses of high dose chemo and transplant, radiation, and antibodies. We travel to Memorial Sloan Kettering Cancer Center in NYC. After 6 years of doing so, we have run out of travel funds. Miracle Flights for Kids is paying for our next trip! We are so very grateful to them for helping not only our family but so many others.
My son was diagnosed with Alagille Syndrome in 2009. The lists of facts and figures on the internet was terrifying. I could only find one charity specifically dedicated to ALGS, but it was based in the USA and I am from the UK. I was desperate for up to date information so I dropped them a line to see if they could send me some. I was pleasantly surprised to learn that their service extends world wide. I receive regular newsletters, I am able to access their message boards, I freely chat with people all over the world on facebook and have made some of the best friends I have. Most of whom I shall never meet, but who the alliance has united. Dealing with a rare disease can make you feel isolated, uninformed and helpless. The Alagille Syndrome Alliance provides facts, support, research grants and anything else they can think of to ease the lives of those connected to this disease, with a view to one day eradicating it completely. I will be forever grateful.
We were devastated and scared when we learned our newborn son had a rare liver disease. In 1995 there was almost no information about Alagille Syndrome (ALGS) on the internet. Finding the Alliance gave us hope. With their help we were able to connect with other ALGS families, learn more about ALGS and find doctors familiar with ALGS. Our 17 year ALGS journey has been so much less of a struggle because of the friends we have made and the support we have found through the Alliance.
We have benefited greatly by this organization it has taught us a great deal about our sons condition and resources such as Colorado Children's Hospital contacts.
After 6 months and many tests trying to figure out what was wrong, my daughter was diagnosed with Alagille Syndrome. It was great to have a diagnosis, but what did it mean??? The Alliance was the first place I ended up. I was able to get key information for the care of my daughter. I learned about CHOP and the annual Gehman picnic. We attended the symposium in SanFrancisco. We made freinds for life. It is a community where you can go for support and ask questions. What a blessing it has been.
My son has Alagille Syndrome and when he was diagnosed in March 2012 I felt my world came crashing down with the devastating news. But as I did research I found this Alliance became my go-to for updates, questions and most importantly, finding others to connect with!! I love the growth charts the Alliance has provided because they are more accurate than the standard charts for baby boys. I also love that my family gets to participate in our first Alagille Syndrome Awareness walk this year and I would have never known about it had I not connected with families in the Massachusetts areas. Great group and I'm so happy to be a part of it!
My daughter was born with Alagille syndrome. The Alagille Syndrome Alliance was a God send to me. I will forever be grateful for the love and support and encouragement I have recieved from them. It is a rare disease and I was able to find others who could help me navigate through the actual day to day functions that were missing in textbook articles.
My niece has Alagille Syndrome which is why I became involved with the Alliance. We started as a small group and have grown into a full fledged support group for ALGS families. We are now embarking on another chapter of our organization with our recent announcement of funding ALGS research. It is an exciting time to be a part of the Alliance, and I look forward to the future.
As a life science professional with the goal of developing treatments for patients organizations like the Alagille Syndrome Alliance are the key to bringing new treatments to patients. The alliance is not only focused on supporting patients and families in managing their condition but also focused on helping the life science community understand this disease and working together to provide funding for research and supporting research in many other ways. Often times it is organizations like the Alagille Syndrome Alliance that act as the collective voice of Alagille patients and families across the country that help make new therapies a reality.
Thanks to the Alagille Syndrome Alliance we were able to find a lot of relevant information when our daughter was first diagnosed. They helped to connect us with other families in similar situations. Also, since Alagille is a rare disease, it was very important to connect to the right doctors. They were very helpful in finding the right doctor for us. Every four years Alliance organizes the Symposium for the families. It is a very informative event where they pull medical experts and families together for multi-day informational sessions. From what I heard, it is very rare to have such an active Alliance for a rare condition. Thank you for all your help.