MEET OUR STAFF


Cher Bork
Executive Director

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

Roberta Smith - President

MEET THE BOARD


Roberta Smith
President/Secretary

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

Roberta Smith - President
Julia Bird
Director

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

Roberta Smith - President
Shambhavi Ravishankar
Director

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

Roberta Smith - President
Mike LaRosa
Director

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

Roberta Smith - President

OUR HISTORY


Cindy D Luxhoj
Founder
Cindy D Luxhoj is the mother of three young adults and Founder of the ALGSA. When Alaina, her first child, was born in 1990 and diagnosed at three months with ALGS, Cindy embarked on a quest for information in the world of rare disease and, in 1993, founded the ALGSA. During her 22-year tenure as President, Cindy dedicated her every available volunteer hour to helping families cope with the daily challenges of ALGS. Alaina lost her 24-year battle in January 2015 while waiting for a liver transplant and now lives on in the memory of the community who loved and admired her. Cindy left the ALGSA in September 2018 after serving on staff as Executive Director for nearly three years. Now, as Alaina did, she is living, laughing and loving every minute of the next chapter of her journey.
Cindy Luxhoj - Founder

CHANGING LIVES TODAY

“Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.”

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