MEET OUR STAFF
Born and raised in Memphis, TN, I started fundraising for St. Jude Children’s Research Hospital when I was around 10 years old holding car washes and block parties and volunteering to serve meals at the local mission. That early exposure to the need around us established a deep passion for service, and those with critical illness truly touched my heart. After my own personal journey with rare disease, I was set on the path to make a difference with a cure based organization. Joining the ALGSA in January 2018 as Development Manager, I have had the privilege of developing relationships with ALGS families, industry, and the rare disease community. In October 2018, the Board of Directors appointed me Executive Director. With a long history in nonprofit fundraising, event management and development, as well as serving on nonprofit boards including Boys & Girls Club, I am committed to leading ALGSA toward future growth, sustainability, and our goal: to find better treatments, a cure and a better life for those impacted by Alagille Syndrome.
Email Cher: cher.bork@alagille.org
MEET THE BOARD
Alagille Syndrome has personally affected my family. It has inspired years of patient advocacy, public speaking, publications, participation in numerous scientific projects and remains the driving force behind ALGSA involvement and the greater rare disease community. My advocacy with the ALGSA started by writing family stories, child highlights, and a column, “Roberta’s Ramblings”, chronicling my family’s life with the syndrome from 2005-2014. I joined the board in 2013, became Director of Communications and Outreach in 2015, and President in 2017. As a Nuclear Medicine Technologist, ALGSA President, and long-time community and rare disease volunteer, elevating the patient voice and experience is so important in advocacy and patient care. I’ve worked 10+ years with Ascension Michigan hospital system and, as a returning student, will earn a Bachelor of Business Administration in Nonprofit Management from Southern New Hampshire University, inspired by the amazing ALGS and rare disease families around the world.
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
My name is Chris Halloran and I joined the ALGSA board in June 2020. My wife Emily and I have been married
for 15 years. We have four children, Shaw (8), Vann (7), Wren (5) and Ford (3). Our son Ford is an Alagille
Warrior. My why for accepting the opportunity to join the ALGSA as a board member is to help serve this community
that our family values so much. During our journey to getting our diagnosis of Alagille Syndrome we found the ALGSA
community online. Immediately we were welcomed by the community and found the love, support and information from others to help us get through the challenging early times of becoming a Rare family.
I’ve worked for 20 years in the consumer product goods (CPG) industry. Most recently I’ve been a member at Johnsonville
Sausage for seven years in Sales. I attended Michigan State University where I earned a Bachelor of Science degree in
Food Industry Management. I also earned a Master of Business Administration at Western Michigan University. I have
previous volunteer board experience serving in all roles on the board for the Grocery Manufacturers’ Representatives
of Grand Rapids from 2012-2015.
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
