WHO WE ARE
Share & Care is a nonprofit dedicated to improving the lives of children and families affected by Cockayne Syndrome (CS) and Trichothiodystrophy (TTD). Since 1981, we've been connecting families with researchers and specialists, offering resources like diagnostic testing, treatment info, financial aid, care packages, and awareness efforts. We're focus on educating medical professionals, funding research, and hosting global conferences that unite the CS and TTD community.
See below to read about our volunteer and medical advisory boards.
Meet Our Team
Jackie Arias, President
Jackie is in her 19th year serving as the Executive Director of Share & Care CS/TTD Network. She has used her professional background as an executive assistant to manage large-scale event planning and logistics and corporate communications.
Her previous nonprofit experience includes working with the Center for Excellence, where she aided in fundraising and program coordination to support gifted and talented students and intercity youth programs. She has also volunteered with several other charitable organizations including Best Buddies, Second Chance, and the Leukemia and Lymphoma Society.
After losing her daughter, Gigi, to Cockayne syndrome in 2004, Jackie began volunteering for Share & Care by creating newsletters and communicating with families. She was appointed to officially step into leadership in 2006, taking on the role of Executive Director to continue guiding the organization’s mission. Since then, Jackie has launched national walk fundraisers, family conferences, and forged strong connections between families and the research community by organizing scientific meetings. Her efforts have helped foster a collaborative environment where families, clinicians, and researchers work together toward better understanding, treatment, and ultimately a cure.
Haylee Carroll, Vice President
Haylee has been a part of Share & Care since 2006. As a professional photographer, she began volunteering by taking photos at Share & Care’s events, including free photo shoots for the families, as well as providing her network of fellow photographers. Over the years, she has used her strong networking skills to build deep relationships with doctors, nurses, and families. Haylee also volunteers to do extensive research to help families find answers, resources, and advise parents as they advocate for their children’s care.
As Vice President, Haylee has taken on critical behind-the-scenes responsibilities, including organizing national conferences, providing tech support, and outreach.
She first connected with the organization in 2006 after facing her own family’s journey with the syndrome. After having three children with Cockayne syndrome, she continues to dedicate her time and experience to help other families on their journey.
Veronica Cuevas, Board Member
Veronica has been a dedicated member of Share & Care through her support of fundraising efforts, raising awareness through her media interviews and outreach.
In addition to her public relations work with Share & Care, Veronica has a background in nonprofit service through her work with Catholic Charities and has volunteered with several other community-focused organizations.
Veronica became connected to Share & Care Network in 2011 after her son was diagnosed with Cockayne syndrome. Living in Alaska, they were the only known family in the state affected by the condition at the time. Veronica traveled to Washington, D.C. to attend a Share & Care conference—beginning of her long-term commitment to discover and welcome more patients into the CS/TTD community.
Jenny Hammel, Board Member
Jenny Hammel has dedicated 39 years to Siemens, where she has held various positions in the areas of marketing and sales, field service, product engineering, training, and management. Currently, she serves as a Program Manager. Jenny holds a degree in Marketing as well as an MBA, which have equipped her with a strong foundation for her diverse career.
Recently married to Brian, Jenny is a proud mother to her daughter, Heidi, who is married and has three children. She also experienced the profound loss of her son, Joe, who had Cockayne Syndrome (diagnosed at age 11) and passed away at the age of 20 in 2020. This personal journey has inspired Jenny to help others navigate the challenges that life presents.
In her free time she in her 15th year of coaching Challenger League baseball, Jenny is committed to fostering inclusivity and support for young athletes with disabilities. Additionally, she has spent three years as a “Cuddler” at the local children’s hospital, providing comfort and care to those in need.
As a board member, Jenny is dedicated to supporting current and future rare disease families by sharing resources, building community, and ensuring that no family faces a rare diagnosis alone. Her work reflects a deep passion for awareness, connection, and hope for those navigating the complexities of the rare disease world.
Katrina Burby-Sorg, Board Member
Katrina Burby-Sorg has worked at the University of Phoenix for the past 17 years, bringing extensive experience in higher education and organizational leadership. She holds both a bachelor’s degree and a master’s degree in Management.
Katrina is married to Jonny Sorg, and together they are raising their three children, Bryan, Myah, and Braden. In 2018, their son Braden was diagnosed with Cockayne Syndrome, a rare genetic condition that reshaped their family’s journey and deepened Katrina’s commitment to advocacy.
As a board member, Katrina is dedicated to supporting current and future rare disease families by sharing resources, building community, and helping ensure that no family faces a rare diagnosis alone. Her work reflects a passion for awareness, connection, and hope for those navigating the rare disease world.
Scientific / Medical Advisory Board
Peter B. Kang, MD