MEET OUR STAFF
Born and raised in Memphis, Tennessee, Cher has grown up around a community that embraces giving back and the value of philanthropy to enrich people’s lives. Cher began fundraising for St. Jude Children’s Research Hospital in Memphis at an early age establishing a deep passion for those suffering from critical illness. Joining the ALGSA in January 2018 as the Development Manager, Cher has developed relationships with families, industry and the rare disease community as a whole. In October 2018, Cher was named the Executive Director of the ALGSA. With a long history in fundraising, nonprofit event management and development as well as nonprofit board service she will lead the ALGSA to future growth, sustainability and to our goal – to find better treatments leading to a cure for Alagille Syndrome.
Email Cher: cher.bork@alagille.org
MEET THE BOARD
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
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
The proud father of 2 boys, my youngest Micco having ALGS, I discovered the world of Alagille Syndrome just a few short months after his birth in 2015. My family made a commitment to do everything we can to advocate for Micco and the greater Alagille community, inspired by our life with ALGS. I joined the Alagille Syndrome Alliance so I could fight for Alagille warriors and their families living around the world and will continue to spread awareness, fundraise for research, and advocate for new treatments and a cure for this complex disorder.
Email Mike: mike@alagille.org
OUR HISTORY
