Executive Committee Bios

Adriane Griffen, Chair

Adriane GriffenAdriane Griffen is a Project Director at the Association of University Centers on Disabilities (AUCD) for a CDC/NCBDDD Cooperative Agreement, which builds public health capacity in birth defects prevention, developmental disabilities, and health promotion for people with disabilities of all ages. Ms. Griffen is currently Chair of the Friends of NCBDDD as well as Awards Chair of the APHA Disability Section. She holds a Master of Public Health with a specialty in social marketing, is a Master Certified Health Education Specialist, and is currently pursuing a Doctor of Public Health in Leadership at the University of Illinois at Chicago.

Sara Struwe, Vice Chair

https://friendsofncbddd.files.wordpress.com/2014/07/sara-struwe.jpg?w=88&h=140In April 2013, the National Office welcomed Sara Struwe as President and Chief Executive Officer. Ms. Struwe has worked in the capacity of Chief Operating Officer since 2009, assuming the leadership of programs and daily operations of the organization. Before her leadership role at SBA, she served as the Director of Chapters at the Crohn’s and Colitis Foundation of America headquartered in New York for one year. Prior to this role, she served as the Vice President of Chapter Development at the Lupus Foundation of America for six years. Ms. Struwe began her career in the Girl Scouts of the Unites States of America working in a variety of positions in three councils

Jennifer Li, Membership Co- Chair

Jeniffer Li, is a Director of Environmental Health & Health & Disability at the National Association of County & City Health Officials

Kendal Lesser, Membership Co-Chair

Kendal Lesser is a Program Analyst at the  National Association of County & City Health Officials

Beverly Robertson, Communications

Beverly Robertson is the National Director of the Pregnancy & Newborn Health Education Center at The March of Dimes

Patrick Johnson, Secretary

Patrick Johnson HeadshotPatrick Johnson is an Assistant Director for Federal Affairs at the American Academy of Pediatrics, covering a range of issues including children with disabilities, newborns and infants, school health, sports medicine, infectious diseases, military health care, health information technology and medical liability. Mr. Johnson also helps lead AAP’s appropriations efforts. Prior to joining AAP in 2011, Mr. Johnson worked on Capitol Hill for six years, serving as a Legislative Assistant for Health Affairs to three Delaware Senators: Joe Biden, Ted Kaufman and Chris Coons. Prior to his work on Capitol Hill, Mr. Johnson worked at the Health Policy Tracking Service at the National Conference of State Legislature for eight years, tracking and monitoring state legislative activity in Medicaid, the State Children’s Health Insurance Program and other state-funded health care programs.

Kathy Brill, Member at Large

Parent to Parent, USA

April Montgomery, Member at Large

NBDPN

Barbara Kornblau, Member at Large

Barbara KornblauBarbara L. Kornblau, JD, OTR, FAOTA is the Director of Health Learning for the National Blood Clot Alliance. An occupational therapist, an attorney, a certified pain educator, and a certified case manager, Kornblau is a former Robert Wood Johnson Health Policy Fellow for Senator’s Harkin and Rockefeller. She has organized many stakeholders to work to include people with disabilities in the Affordable Care and its implementing regulations. She is a Past President of the American Occupational Therapy Association. She has litigated cases under the Americans with Disabilities Act involving discrimination in health care services. Kornblau has presented nationally and internationally, and is widely published. A former Dean, and Professor of Occupational Therapy, Public Health, and Law, her current academic appointment is in the Occupational Therapy Program at Florida A&M University.

Angela Blackwell, Member at Large

Angela Blackwell HeadshotAngela Blackwell is a Research Public Health Analyst at RTI with more than 10 years public health experience. Ms. Blackwell received her MPH from Tulane University. Over the years she has gained experience implementing, monitoring, managing and evaluating different projects and programs. Her strong leadership and organizational skills has allowed her to work on a vast array of complex tasks at RTI including multiple projects within NCBDDD such as Analytic Epidemiologic and Data Management Services. She serves as the Task Leader managing RTI staff working in CDC facility. She serves as a liaison between CDC management (technical/scientific monitors) and RTI to ensure continued client satisfaction through open communication and well-managed project workflow, staffing, and budget. Ms. Blackwell was also the Study Coordinator for NCBDDD/BDB MACDP surveillance program for many years, and she is the Project Manager for NCBDDD/RDHO team project, QOL Models and Measures for People with Muscular Dystrophy.

Jeff Cohen, Member at Large

Jeffrey Cohen HeadshotJeffrey is the Interim Executive Director of the National Fragile X Foundation (NFXF). He has degrees in business administration and law and has been associated with the NFXF since 1996. First as a member of the board (1996-2010), then as board president (’97-’03), chair of the Public Policy Committee (’03-’10), director of government affairs and advocacy (2011-2013) and finally as interim executive director (2013-present). Jeffrey first joined the board (with his wife Arlene) after attending the 4th International Conference in Albuquerque in ’94. The Conference took place a few months after he received the diagnosis that his then five-year-old twins had FXS. Jeffrey’s two children living with FXS are now well on their way to successfully transitioning into independent and productive adults. – See more at: http://www.fragilex.org/foundation/team/#sthash.4zXL9k2d.dpuf

James Gelfand, Advocacy Coalition Co-Chair

MOD – Saving Babies

Annie Acosta, Advocacy Coalition Co-Chair

The Arc – Improving Health and Advocacy Liaison to Executive Committee

Katie Verb, Advocacy Coalition Co-Chair

HFA – Helping People

Patrick Johnson, Advocacy Coalition Co-Chair

AAP – Helping Children

Roberta Carlin, Past Chair

Roberta CarlinRoberta Carlin, JD, MA, MS has been the Executive Director of the American Association on Health and Disability (AAHD) in Rockville, MD since 2002. Ms. Carlin was the former Chair of the Friends of NCBDDD from 2011-2012. She also served as the Communications Chair of the APHA Disability Section from 2007-2012 and presently Co-Chairs the CCD Prevention Task Force. Ms. Carlin has been involved in the disability and health field for over 30 years with special interests in health promotion and wellness, primary prevention, policy, disability research, government relations, information dissemination and building collaborative initiatives.

 Andrew Imparato, Fiscal Agent Contact

Andy Imparato HeadshotAndrew Imparato, JD, is the Executive Director at the Association of University Centers on Disabilities (AUCD). Mr. Imparato’s perspective and passion is informed not only through his professional career but also through his own experience with bipolar disorder. He came to AUCD in September 2013 from the position of Senior Counsel and Disability Policy Director for the U.S. Senate Committee on Health, Education, Labor, and Pensions, chaired by Senator Tom Harkin of Iowa. In that position, Mr.  Imparato was the lead staffer for Chairman Harkin’s effort to reauthorize the Rehabilitation Act as part of the Workforce Investment Act; to expand the number of people with disabilities working in integrated, competitive employment; to improve accessibility of taxicabs, movie theaters, airplanes, and electronic and information technology; and to improve transition outcomes for the generation of young people with disabilities who have come of age since the passage of the Americans with Disabilities Act.

Previous positions include President and Chief Executive Officer of the American Association of People with Disabilities (AAPD), the largest cross-disability membership organization in the U.S. Prior to joining AAPD, Imparato was General Counsel and Director of Policy for the National Council on Disability, an attorney advisor with the US Equal Employment Opportunity Commission, counsel to the U.S. Senate Subcommittee on Disability Policy, and a staff attorney with the Disability Law Center in Boston, Massachusetts.

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