Chair 2011-2012
John Kramer
John Kramer co-founded and is a leader of the Sibling Leadership Network (SLN) in the United States, a growing movement of brothers and sisters of people with disabilities, siblings with disabilities, and committed professionals interested in policy, services, and research related to siblings. Currently he is serving as chair of the SLN. John also co-founded the Massachusetts Sibling Support Network and Supporting Illinois Brothers and Sisters, both state-wide advocacy groups for siblings s. John is currently working with the research team at the Institute for Community Inclusion at the University of Massachusetts at Boston on systems change and employment issues for people with disabilities. John Kramer received his Ph.D. in Disability Studies from the University of Illinois at Chicago, with his dissertation addressing the mutual support roles in aging families of people with disabilities and issues of future planning for people with Intellectual Disabilities and their brothers and sisters.
Outgoing Chair
Katie Arnold
Katie Arnold is the Director of Community Education in the Institute on Disability and Human Development (IDHD) at the University of Illinois at Chicago. IDHD is the University Center of Excellence in Developmental Disabilities for the State of Illinois and serves as the bridge between academia and the community throughout Illinois. Katie provides education, training, and resources on various topics which include enhancing the direct support workforce, self-directed supports, supporting healthy relationships and sexuality for people with disabilities, and the sibling experience. Katie currently serves on the Board of the Arc of Illinois. Katie also provides leadership to Supporting Illinois Brothers and Sisters (SIBS) as well as serving as Chair of the national Sibling Leadership Network.
After graduating from the University of Chicago in 2001, Katie lived at L’Arche Chicago, a community based on mutual relationships where people with and without developmental disabilities live together. She has a Masters in Disability and Human Development from the University of Illinois at Chicago. Katie received the 2009 UIC Humanitarian of the Year award for her dedication to the advancement of human rights of people with disabilities. Katie’s passion about her work with people with disabilities stems from her experience growing up with her sister with developmental disabilities.
Secretary
Shea Tanis
Emily Shea Tanis is a doctoral candidate in the Department of Special Education at the University of Kansas, a University Center for Excellence in Developmental Disabilities (UCEDD) trainee at the KU Center on Developmental Disabilities, and a doctoral fellow at the Beach Center on Disability.
Her current work focuses on the theoretical analysis of support needs and adaptive behavior in children with Intellectual and Developmental Disabilities (IDD) using structural equation modeling. Shea is also interested in the area of supported and customized employment and is currently working collaboratively on a web-based curriculum that blends self-directed planning practices with customized employment to achieve competitive employment outcomes for adolescents with IDD.
Shea serves on the Executive Committee of the Sibling Leadership Network, an organization that “provides siblings of individuals with disabilities, the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.” Shea has also been appointed as the only student member of the American Association on Intellectual and Developmental Disabilities (AAIDD) Task Force that is developing the Children’s Version of the Supports Intensity Scale, and is a member of AAIDD’s Student and Early Career Professionals Committee.
Treasurer
Tamar Heller
Tamar Heller,Ph.D., Professor, is Head of the Department of Disability and Human Development, University of Illinois at Chicago and director of its University Center of Excellence in Developmental Disabilities for the State of Illinois. She also directs the Rehabilitation Research and Training Center on Aging with Developmental Disabilities and projects on family support and health promotion interventions for individuals with disabilities. One of these projects is the Special Olympics Research Collaborating Center.
Dr. Heller has written over 150 publications and presented numerous papers at major conferences on family support interventions and policies, self-determination, health promotion, and aging of people with developmental disabilities. She has co-edited and co-written four books and edited special issues of Technology and Disability, American Journal on Mental Retardation, Journal of Policy and Practice in Intellectual Disabilities, Family Relations.
She is the incoming President-Elect of the board of the Association of University Centers on Disabilities. As a co-founder of the national Sibling Leadership Network, she is a member of its steering committee. Her awards include the 2009 Autism Ally for Public Policy Award of The Arc/The Autism Program of Illinois; the 2008 Lifetime Research Achievement Award, International Association for the Scientific Study of Intellectual Disabilities, Special Interest Group on Aging and Intellectual Disabilities; and the 2009 Community Partner Award of Community Support Services. In 2005 she was a delegate to the While House Conference on Aging.
Research Chair
Cindy Chambers
Cynthia Chambers is an Assistant Professor and Program Coordinator of Special Education at East Tennessee State University (ETSU). Dr. Chambers has been providing supportive and capacity-building services to families of individuals with disabilities across her career. During her tenure at Vanderbilt University as a Master’s student and University of Kansas as a doctoral student, Dr. Chambers focused her research and practice efforts on sibling-related issues across the lifespan. While engaging in professional efforts around sibling issues, Dr. Chambers discovered many similarities between her practice with families and her experiences as a sister of a brother with mental health issues. Today, Dr. Chambers continues to focus her practice on siblings. As a faculty member at ETSU, Dr. Chambers founded Siblings United, which provides supports and workshops for siblings in the East Tennessee region. Dr. Chambers recently entered the role of Co-Chair of the Research Committee for the national sibling effort, Sibling Leadership Network.
Ann Kaiser
Ann P. Kaiser, PhD is the Susan W. Gray Professor of Education and Human Development at Peabody College of Vanderbilt University. Dr. Kaiser’s primary area of research is early language interventions for children with developmental disabilities and children at risk due to poverty. Her other research interests are sibling relationships and families of children with disabilities. Dr. Kaiser was the co-director of the Sibling Research Consortium and is a member of the Sibling Leadership Network Board of Directors.
Services and Supports Chair
Tom Fish
Tom Fish, PhD, is a board member of the Down Syndrome Association of Central Ohio. He is the founder of the Next Chapter Book Club, a community literacy and friendship program with over 80 clubs throughout the country. Dr. Fish was a recipient of a Mary Switzer Research Fellowship from the National Institute on Disability and Rehabilitation Research for his work on attitudes of families of youth with disabilities toward transition from school to adult life.
Policy and Advocacy Chair
Angela Martin
Angela Martin is a Community Support Specialist/Research Assistant with the Developmental Disabilities Institute at Wayne State University in Detroit, Michigan. Ms. Martin has a Master’s degree in Social Work with a concentration in Community Practice and Social Action. She has experience in family support resource development and curriculum design and training of programs on Self-Determination, Person Centered Planning, and Leadership/Self-Advocacy. Angela’s youngest sibling, who was born with intellectual and development disabilities over 20 years ago, has laid a strong foundation in her life’s work particularly as it relates to Self-Determination. As a founding member of Michigan Partners for Freedom, Angela has been involved in building statewide demand for Self-Determination.
Public Relations Chair
Emily Holl
Emily Holl is a Senior Manager at YAI/National Institute for People with Disabilities, a New York City based not-for-profit organization which provides services to people of all ages with intellectual and developmental disabilities and their families. She is a member of the Sibling Leadership Network, a national organization dedicated to connecting the siblings of individuals with developmental disabilities to information, resources, support and each other. Emily is a founding member of sibsNY, an organization with the same mission for siblings throughout New York state.
Chair of Chapter Development
Ashley Coulter
Ashley Coulter is the Sibling Project Coordinator at the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities. Ashley coordinates the SibSaturday program for children with brothers or sisters with disabilities, as well as Tennessee Adult Brothers and Sisters (TABS), a statewide organization for adult siblings. Ashley currently serves on the Board of Directors for The Arc of Tennessee, as well as Chair of the Membership Committee. She also serves as Chair of Network Development for the Sibling Leadership Network.
Ashley graduated from Auburn University with a degree in Rehabilitation and Disability Studies in 2006. She is the older of two siblings. Her brother, Will, is four years younger and has cerebral palsy. He is currently taking online courses in computer forensics! Ashley is married and has a daughter and lives just outside of Nashville, Tennessee.
Alabama Chair
Karen Driver
Karen Driver graduated magna cum laude from the University of Montevallo with a Bachelor’s Degree in Social Work and a Minor in Business. She has a Master’s Degree in Social Work from the University of Alabama and is currently a Licensed Graduate Social Worker. Karen graduated from Partners in Policy Making in 1996 and was appointed by Governor Bob Riley to the Alabama Council for Developmental Disabilities in 2010. Previously, Karen worked for 20 years at a Fortune 500 Company in accounting while at the same time maintaining the accounting portion of her family’s business. Due to having two siblings with developmental disabilities, Karen decided to join The Arc of Shelby County part-time to support, and join with, other families in advocating for disability related issues while maintaining her position as Vice-President of her family’s business.
Illinois Chair
Nora Handler
Nora Fox Handler is a committed sister to her three brothers with developmental disabilities, Marty, Patrick, and Michael. Michael also has a serious mental illness. She is a passionate advocate for people with disabilities and their families. She shares the story of her family’s experience and the consequences of their lack of planning for the future. Her story is published in Thicker Than Water: Essays by Adult Siblings of People with Disabilities.
Nora is a founding member and treasurer of Supporting Illinois Brother and Sisters (SIBS) in Illinois and on the Board of Directors of the national Sibling Leadership Network. She also serves on the Advisory Committee of the Sibling Support Project. Nora is an advocate advisor of the Rehabilitation Research and Training Center on Aging with Developmental Disabilities (RRTCADD) and the Institute on Disability and Human Development at the University of Illinois at Chicago. Nora received the Family Advocate award from the Arc of Illinois and is a Board member of the Arc of Illinois.
Georgia Chair
Regina Sullivan
Regina Sullivan was raised in Alabama. She is the middle child of three, with the oldest sibling, Plato, diagnosed with Autism at the age of four. She is presently the mother of two and wife of Joseph Sullivan. She is also a captain in the Air National Guard, a practicing Doctor of Optometry, and pursing her Master of Public Health at Georgia State University. As a graduate research assistant at Georgia State University, she works for the Center of Leadership in Disability (CLD), which is a division of the Center for Healthy Development.
The Georgia Sibling Connection is a chapter of the Sibling Leadership Network and supported by the CLD. The mission of the GSC is to provide adult siblings of individuals with developmental disabilities information they need to support their sibling’s desire to live the most independent and fulfilling life possible, serve as advocate or voice for their sibling, and let them know that we understand the struggles they face.
Massachusetts Chair
Jennifer Weisman
Jennifer Weisman is a founding member and Clerk of the Massachusetts Sibling Support Network. (MSSN). Jennifer received her PhD in Counseling and Personnel Services from the University of Maryland at College Park. Her dissertation was on the experiences of college students who have a sibling with a developmental disability. While working on her dissertation research she received a Jack and Helen Gorelick Sibling Scholarship from the AHRC New York City.
Jennifer currently works as a Research Associate, focusing on gender and racial equity in science, technology, engineering, and mathematics education. Prior to that she worked on several college campuses as a Student Affairs professional and academic advisor. Jennifer has a younger sister who has Down Syndrome.
New Hampshire Chair
Kaleigh Hansen
Kaleigh Hansen is Sibshop Facilitator at SIBS NH. Prior to starting SIBS NH with another facilitator, Kaleigh co-facilitated the Siblings Program at Gateways Community Services in Nashua NH for more than 5 years! Kaleigh has a brother, Joshua, that experiences intellectual disabilities as well as Epilepsy. Kaleigh is a graduate of Nashua Community College with an associate degree in Human Services. She is currently working on her Bachelor’s Degree in Child and Adolescent Development. She is also a graduate of the Family Leadership Program through the New Hampshire Institute on Disabilities.
New York Chair
Lindsay Kennedy
Lindsay is currently working in the New York City Department of Education as a Mathematics Teacher. She received her Bachelor’s Degree in Education from Boston University and her Masters Degree from Touro College. Prior to working in New York, Lindsay taught for one year in Boston, Massachusetts and for three years in London, England.
She has three sisters, one of whom was born with developmental disabilities and resides in an AHRC community residence on Staten Island, NY. Lindsay is a member of AHRC’s Sibling Committee and helps organize an Annual Cocktail party to support AHRC Sibling Services. She is a member of SibsNY, an organization dedicated to connecting the siblings of individuals with developmental disabilities to information, resources, support and each other.
Ohio Chair
Barb Sapharas
Barbara Sapharas, MA is a Specialist in Training and Research Cuyahoa County Board of Developmental Disabilities, Cleveland, Ohio. She is also on the board of Ohio SIBS. She is a speech language pathologist, mentor trainer of the Learning Community for Person Centered Practices and has a younger brother, Nick who had cerebral palsy and needed total supports. She had supported him through his adulthood ad as he learned that he was terminally ill. She used the person centered tools to enhance his quality of life support his right to make informed decisions through his life and at the end of his life.
Tennessee Chair
Tina Prochaska
Tina Prochaska is Communication Specialist and Sibshop Coordinator at the Tennessee School for the Deaf in Knoxville where she has served as a Sibshop leader for almost 20 years! Tina has a deaf brother, Michael. She has been instrumental in bringing Sibshops to siblings of children who are deaf, deafblind or have CHARGE Syndrome.
Tina is active in Tennessee Adult Brothers and Sisters (TABS), an adult sibling support group. She is a member of the Sibling Support Project’s Advisory Committee and is also a member of the Community Advisory Committee at the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities. Tina is a graduate of the University of Tennessee, with degrees in Deaf Education and Curriculum and Instruction.
Utah Chair
Bekke Robb
Bekke Robb is a founding member and the current Chair of UTABS. She is also the founder of Self Reliance of Utah, a nonprofit that provides life skills coaching to adults with mild cognitive disabilities to increase their participation in the community and reduce their risk of homelessness and unemployment. Bekke received her Bachelor’s degree in Social Work and her Master’s in Public Administration from the University of Utah. She is the oldest sibling of four, her sister was born with a mild developmental disability and is a current client of Self Reliance.
Washington, D.C.
Rachel Patterson
Rachel Patterson is a founding member of DC Sibs, the SLN chapter for the Washington, DC metropolitan area. She graduated from Whitman College with a degree in Politics, and her undergraduate thesis focused on the role of personhood for people with developmental disabilities in long term care policy. She has a Master’s Degree in Public Administration from the Maxwell School at Syracuse University. While in Syracuse she worked for the Burton Blatt Institute before moving to her current position at the Association of University Centers on Disabilities in Silver Spring, Maryland. Her sister, Amy, has Wolf-Hirschhorn Syndrome, which causes intellectual and developmental disabilities.
Members at Large
Don Meyer
Don Meyer is the director of the Sibling Support Project. Don is probably best known for creating Sibshops, lively programs just for young brothers and sisters of kids with special needs. Currently, there are over 260 Sibshops in eight countries. Don also created SibKids and SibNet, no-cost listservs for young and adult brothers and sisters which allow hundreds of siblings from around the world to connect with their peers. A sought-after speaker, Don has conducted hundreds of workshops on siblings, fathers, and grandparents of children with special needs and trainings on the Sibshop model throughout the United States, Canada, Ireland, England, Italy, New Zealand, and Japan. Don was a founder of the SEFAM (Supporting Extended Family Members) program at the University of Washington, which pioneered services for fathers, siblings, and grandparents of children with special needs. Don is the senior author or editor of Sibshops, and the children’s books Views from Our Shoes and the Sibling Slam Book. His most recent book is Thicker than Water:essays by adult siblings of people with disabilities.
Bryon Murray
Bryon Murray is a motivational speaker from Utah and the owner of B. Murray Consulting. His consulting company is designed to help people with and without disabilities to better understand how we can all work together for a better quality of life. He believes that many of the barriers that prevent people with disabilities from reaching for and attaining the dreams all people have, are based on misunderstanding, lack of understanding and unfamiliarity by people without disabilities.
He feels that sometimes people with disabilities lose faith that barriers can be overcome. Bryon looks at both sides of the barriers and offers opportunities and guidance on how we can all get beyond them. Education from the heart is the key and Bryon Murray possesses the gift of using his life experiences to teach the message. He currently serves on the Board of Directors of the national self advocacy organization, Self Advocates Becoming Empowered (SABE) and the Sibling Leadership network.
