We are the Rodriguez family and we currently live in Philadelphia. We immigrated from Puerto Rico to USA when we learned that our son Kenneth had Alagille Syndrome. Receiving a diagnosis of what that is like fills you with uncertainty and despair. The Alliance for Children with Alagille Syndrome played a very important role in our journey discovering Alagille and continues to be by our side giving us support and knowledge through the struggle to discover important and essential information for all the families. We are eternally grateful to this wonderful alliance and the people behind them. They are angels in our lives!
My 17 year old son was born with Alagille Syndrome. We felt so alone during the first few years of his life because we did not know of the Alagille Syndrome Alliance. He was so miserable and sick and there was limited information on the internet or even doctors could give us about Alagille syndrome. We had many many dark days without knowing anyone to look to for support through this journey. What a blessing and relief it was to have found the Alliance when we did. They offer such a tremendous amount of support to Alagille patients and their families. They offer financial, and emotional support to families among many other things. The research they are conducting/participating in is incredible as well. We do not feel alone navigating this disease any more. They have connected us to so many other families that have or are going through similar situations and are on this Alagille journey. We are beyond thankful for the ALGS Alliance!
Twelve years ago, when our son was born with Alagille Syndrome, it felt like we were launched into an impossible battle. Searching the internet brought little comfort—Alagille Syndrome didn’t just feel rare; it felt invisible. But discovering the Alagille Syndrome Alliance changed everything for our family. It gave us not only knowledge but also hope and a sense of community.
For years, we managed this disease on our own, uncertain and overwhelmed. When we found the Alliance, it was like a light in the darkness. Living with a rare disease means navigating uncharted territory, and as parents, we often struggled to understand whether certain symptoms were connected to Alagille Syndrome or something else entirely. The Alliance has been an invaluable guide, providing clarity, resources, and support when we needed them most.
What sets the Alliance apart is its proactive approach. Every time I’ve thought of something that could help Alagille families, I’ve reached out—only to learn that the Alliance was already working on it. Their responsiveness and forward-thinking make an incredible difference in the lives of families like ours.
The Alliance’s impact goes beyond direct support for patients and families. They provide exceptional educational resources for parents, doctors, schools, and others who interact with Alagille patients. Their efforts extend to groundbreaking research that has led to new therapies and treatments, giving us real hope for better outcomes.
One of the most extraordinary aspects of the Alliance is the access they provide to experts in the field. When our son faced unique challenges, I reached out to their leadership and was connected with specialists who helped guide our family and our medical team to the best care and treatment options. This personalized support is something we could never have imagined before.
Dealing with a rare disease can be isolating and overwhelming, but the Alagille Syndrome Alliance has turned our journey into a shared effort. They make the impossible feel possible. They don’t just provide resources—they provide a team.
I have witnessed the Alliance make incredible leaps in an unbelievably short time in their quest to support patients, families and research into Alagille Syndrome (ALGS). When I first learned of the Alliance in 2018 at a GALA in San Diego, I knew nothing about ALGS and met patients for the very first time. I was impressed with the open and energetic manner with which everybody including myself was welcomed and made to feel part of the community. Since then, I have learned that everything and everyone is approached with the same energy and openness which explains the rapid growth and increased reach that they have and continue to experience. Needless to say, a lot of hard work is required to maintain, let alone expand, the footprint of an organization such as the ALGSA globally. It has been nothing short of amazing to witness their success in growing and supporting their community within and well beyond the boundaries of the US.
Our son is 8 years old and was diagnosed with Alagille Syndrome at just 2 months old. He has undergone two transplants and also has pulmonary stenosis. From the moment of his diagnosis, we began searching for support and discovered the ALGSA. Since day one, they have been an incredible source of help for our family. Today, I am an active member of the ALGSA and a witness to the tremendous impact it has had—economically, emotionally, and educationally—on a global scale and within the Spanish-speaking community. Their immense support has transformed countless lives, including ours.
The ALGSA has been an essential part of my family’s journey with Alagille Syndrome. They have given us an incredible amount of support over the years, from connecting us with physicians to helping us financially during trying times. More recently, they started a program that address mental health and how challenging navigating this disease can be. We meet monthly with a psychologist to help us access support and resources to address caregiver and patient anxiety and PTSD. I cannot say enough wonderful things about this organization. They do SO much for this community and truly are fighting for a better life for ALGS Warriors and families.
My son Zachary was diagnosed with Alagille Syndrome through genetic testing when he was 3 months old. His journey has had many ups and downs, and unfortunately experiences all of this the symptoms of ALGS. He is now 2 and currently awaiting a liver transplant. The Alagille Syndrome Alliance has been there for us every step of the way. The Facebook groups are so helpful and encouraging. The Alliance is always willing to answer questions, share information about ALGS, and help with locating resources. I am so thankful for this amazing organization.
Both my husband and my son were diagnosed with alagilles, and the ASA has been amazing with providing answers and informative links etc. It's been a long journey for us. And it's been very difficult. We lost our 14 month old son to his alagilles and seeing all the wonderful stories of success makes me feel comforted.
My daughter was diagnosed with ALGS at about 2months. Having a reliable source to gather information about ALGS and the ALGS community helped me more than I could’ve imagined. We can’t do much to help our ALGS warriors, so having somebody advocate for them is a huge relief for me as a parent.
The ALGSA has been an important part of our journey since my son’s diagnosis in 2017. They have connected me to amazing families and resources, provided my family with education, and so much more. The ALGSA gives my family so much hope for my son and his future.
It is hard to overstate the importance of the ALGS Alliance to the all aspects of treating our daughter's illness: from research promotion, to networking, to personal emotional support.
The Alagille Syndrome Alliance has done so much for my family. I reached out to them and they were so nice and understanding. Their was no judgement. Roberta and Cher are amazing loving people.
I have been unable to work during this pandemic, due to my son having health issues. The alliance has help me and my kids to stay in our home, and make sure we have what we need throughout the month. I could not be more grateful to them.
I would like to thank everyone on the board and all who have volunteered and donated.
Our daughter Giullianna was diagnosed with Alagille Syndrome at 10 weeks, a but over 8 years ago. While figuring out our new normal, I came across the Facbook page for the Alagille Syndrome Alliance, and that moment changed our lives. Through the Alliance have gained a community, support, long lasting friendships, connections, access to medical personnel, access to critical information, and assistance in times of need. We have been recipients of three awards of assistance through the Alliance which have helped us provide a better quality of life for our precious daughter and have eased the financial pressures that come with life with a rare disease. The last of these being the Continuity of Care grant for families impacted by COVID-19, which has helped us educate her at home through this pandemic, ensuring her safety. The Alagille Syndrome Alliance has made a truly significant difference in the life of our family and we could not be more grateful for them.
Zachary was diagnosed with ALGS at approximately 6 weeks old. The people with the ALGSA are true heroes. They have a wealth of information and resources that are helping us understand ALGS. I lost my job, so they helped us financially get through this difficult time. We would have been lost without these wonderful people.
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.
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.