I’ve been involved with the ALGSA since 2005, writing “Roberta’s Ramblings”, chronicling my life as a single mother with twins, one having ALGS. I also work in Nuclear Medicine. Coming onto the board in 2013 as the Director of Communications and Outreach, I connected with the personal, emotional, unspoken, and dark aspects of dealing with ALGS. I worked tirelessly to open the doors of communication about this within the ALGS community and to bring about more support and understanding to the world we live in. As President, I’m working to ensure a more sustainable foundation within the ALGSA and will continue to bring ALGS stories and programs to those who need them. Always looking to make a better life for those living with ALGS and for my family, the future of the ALGSA, and for those who’ve passed from this complex syndrome.

Email Roberta: roberta@alagille.org

My son Lucas was diagnosed with Alagille Syndrome when he was three months old, forever changing our lives. Lucas is my first born, so being a new mother and facing this disease was difficult, but I quickly learned that these ALGS babies are so special and strong! I became determined to take a stand with those who battle ALGS and vowed to do whatever it takes to fight this disease with them. Our journey has not been easy, as many others who face all the trials that come with Alagille Syndrome, but I am excited to join the Alagille Syndrome Alliance and help families in whatever way that I can.

Email Julia: julia@alagille.org

Stephanie is a Market Information Consultant for Consumer Lending and currently resides in Las Vegas, Nevada as a MyWork associate for Bank of America. She currently holds a Bachelor of Science in Decision Information Systems from University of Florida and a Master of Science in Computer Information Systems from University of Phoenix. Her biggest passion is serving people and her customers, whether that be through community volunteerism, Employee Networks like LEAD for Women or other non-profits that she’s affiliated with. Stephanie started an event theme, called #rockkindnessforacure, in 2017 during the ALGSA Fight For a Better Life fundraising campaign which has evolved into a movement to advocate and create awareness through painting kindness rocks. She hopes to continue her work as a Director through this event and by bringing more awareness to ALGS. Stephanie is married and has one daughter along with two fur babies. In her spare time she enjoys travel, DIY projects and spending quality time with family and friends.

Email Stephanie: stephanie@alagille.org

I have three kids ages 10, 7 and 3. Our youngest, Ben, has ALGS and is the reason I’ve chosen to serve on the board. I’m excited to further research and advance studies to lessen the effects and eventually find a cure.  Ben was diagnosed at 1 month old and after he turned two was listed for liver transplant. Five months later he was blessed with a new liver. It has been about a year and a half since his transplant and our experience has brought me new insight to the needs of our Alagille Warriors. The desire to help and encourage others on the same journey is strong. Away from the board, I work as a financial planner, I coach basketball and football for my oldest son, road bike, run, and enjoy many adventures with the family.

Email Tim: tim@alagille.org

I am a proud mother of an Alagille warrior and 3 fur babies.  We live in Ontario, Canada and are usually found singing, reading or laughing.  Our world is full of friends and family who have supported us unconditionally during this medical, emotional and physical journey.  Seeing the passionate work that the researchers continue to do and the hope of a future for ALGS patients is what motivates me.  The initial steps into the Alagille world were confusing and extremely difficult until we found an informed and caring doctor to guide us.  Chord has brought more joy and peace into my life than I could have ever dreamed, and I would do anything to return those feelings to him- that is why being a Board member is so important to me.

Email Tara: tara@alagille.org

Born and living with ALGS in India, I am committed to reaching out and bettering the lives of families like mine who struggle with the disease. Thriving by conquering ALGS varies from culture to culture and region to region. Therefore, I would especially love to work with ALGS families in developing nations, given their unique positions, to help them create their own normal. I’m a lawyer working in New Delhi on Policy & Legislative Research of health and disability law and environmental law. I hope to be able to contribute meaningfully to my ALGS family with my personal experiences and the professional skills I’ve acquired. An avid reader,  lover of old English movies, reading, tea and of life in general.

Email Shamy: shamyr@alagille.org

I am a father of 4 children (Isabella 9, Trae 7, Gabriel soon to be 5, and Max 2) with my wife Molly. Gabriel is our Alagille Warrior. We live in Canton, Ohio with a very close knit extended family, truly the reason we are able to survive an ALGS diagnosis. My wife and I are both educators. She teaches the gifted and STEM program for elementary and middle school kids. I have a non-traditional classroom as I have been coaching college soccer the the past 15 years. I am a graduate of Malone University with Bachelor’s degree in Business Administration and a MBA in Business Management. I also have a Master’s degree in Operations and Supply Chain Management with a concentration in Health Care Management. In addition, I have previous experience managing a midsized construction company fulfilling accounting, human resources, contract management and managing a staff of three.

Email Marquis: marquis@alagille.org