Friends as Champions!

The Friends of NCBDDD Executive Committee is happy to announce the following members of the Friends as Champions:

Saving Babies through Birth Defects Research and Prevention

Focus Area 1: Saving babies through birth defects prevention and research

Kerri Wade, Association of Women’s Health, Obstetric and Neonatal Nurses

Kerri WadeKerri Wade is the Director of Government and Media Affairs at the Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN) in Washington, DC.  In that capacity, she manages all aspects of AWHONN’s public affairs activities, including policy development, legislative advocacy, grassroots outreach, speech writing, and media relations. Prior to joining AWHONN in 2007, Kerri’s experience includes positions on Capitol Hill and in the not-for-profit sector. She holds a Masters degree in Public Administration from George Washington University and a Bachelor of Arts degree in political science from the University of Michigan, Ann Arbor. A Michigan native, Kerri, her husband, and their daughter live in Washington, DC.

James Gelfand, March of Dimes

James GelfandJames Gelfand, Director of Federal Affairs, March of Dimes. Mr. Gelfand oversees March of Dimes advocacy efforts at the federal level. James has over 10 years of advocacy, policy, and political experience, including four years on Capitol Hill, serving as counsel to Senator Olympia Snowe (R-ME) on the U.S. Senate Small Business Committee, and to Senator Tom Coburn (R-OK) on the U.S. Senate Homeland Security Committee, covering health care and other Senate Finance Committee issues. Gelfand also served as a lobbyist for the U.S. Chamber of Commerce, and managed political projects during the 2014 election season.

Family Liaison, Sheri Romblad

Sheri Romblad“Saving babies through birth defects, prevention and research thematic has had the most impact on myself and my family. As a mother of a child who was late identified with hearing loss, my experience and contribution to the detection and intervention of hearing loss in babies and young children has become my passion.  Early detection and intervention at the time of diagnosis for any child allows them to achieve better results academically, socially and emotionally across their lifespan. ”

Family Liaison, Shannon Kaiser – Home First Family Support Coordinator, MA

Shannon Kaiser family“I chose the saving babies campaign because my daughter was born with two separate genetic conditions, including a congenital heart defect. I’ve watched her overcome so many complicated issues that I wish there was more awareness, funding and research for. I am dedicated to being a voice for so many that haven’t been heard.”

Family Liaison, Kayte Thomas – Co Founder, Medical Liaison, Director of Patient Advocacy, NC

Shannon Kaiser “Birth defects are a critical issue – they are the leading cause of infant mortality and currently, 1 in 33 babies born in the United States has a major structural defect. As the mother of a child born with multiple birth defects and an advocate for countless others like her, it is imperative to me that we focus coordinated efforts on funding research to determine the causes of congenital anomalies so we can improve the lives of those living with them and ensure that future generations are born with a healthy start in life. “

Understanding Autism to Help Children Live to the Fullest

Focus Area 2: Helping children live to the fullest by understanding developmental disabilities like autism

Pat Johnson, American Academy of Pediatrics

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.

Adriane Griffen, Association of University Centers on Disabilities

Adriane GriffenAdriane Griffen serves as the Director of Public Health at the Association of University Centers on Disabilities (AUCD), where she focuses on building public health capacity on birth defects, developmental disabilities, and health promotion for people living with disabilities across the age span.  Previously, she served as the Director of Health Promotion and Partnerships for the Spina Bifida Association (SBA) where she was responsible for program and campaign management, program design, evaluation, partnership development and grant efforts.  Ms. Griffen serves as the Chair of The Friends of CDC’s National Center on Birth Defects and Developmental Disabilities, sits on the National Association of County and City Health Officials (NACCHO) Health and Disability Workgroup, and serves as the Awards Chair on the Executive Committee of the American Public Health Association (APHA) Disability Section.  Ms. Griffen holds a Master of Public Health from The George Washington University School of Public Health and Health Services, 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.

Alison Singer, President, Autism Science Foundation

Alison Singer is Co-Founder and President of the Autism Science Foundation, a non-profit organization dedicated to funding autism research and supporting the needs of families raising children with autism. As the mother of a child with autism and legal guardian of her adult brother with autism, she is a natural advocate. Since 2007, Singer has served on the national Interagency Autism Coordinating Committee (IACC) which is charged with writing a strategic plan to guide federal spending for autism research. Within the IACC, she served as co-chair of the safety subcommittee and currently sits on the subcommittees for Strategic Plan Review and Services. Singer also currently serves on the executive board of the Yale Child Study Center, on the external advisory board of the Marcus Autism Center at Emory University, and on the external advisory board of the CDC’s Center for Birth Defects and Developmental Disabilities. In 2012, the American Academy of Pediatrics named her an “autism champion”. Alison currently chairs the International Society for Autism Research public relations committee and is a member of the IMFAR program committee and community advisory committee. Prior to founding the Autism Science Foundation in 2009, she served as Executive Vice President of Autism Speaks and as a Vice President at NBC. She graduated magna cum laude from Yale University with a B.A. in Economics and has an MBA from Harvard Business School.

Family Liaison, Jennifer Pineo

Jennfier Pineo“I understand the joys and challenges having children with Autism brings to a family. Working on projects that bring understanding and awareness of Autism to the wider community allows families like mine to focus not just on the roles we inherited along with a diagnosis, (such as case manager, therapist, advocate,) but to truly focus on the joys of being parents. “

Family Liaison, Christy Sears – Family of Connection, South Carolina

Christy Sears “My 3-year-old son Carter has developmental and physical differences. Since his birth, my mission has been to support and encourage families through our own experiences. My hope is to increase parents’ understanding of their child’s strengths, despite their disability; while assisting them in leading full, and productive lives.”

Protecting People and Preventing Complications of Blood DisordersFocus Area 3: Protecting people and preventing complications of blood disorders

Katie Verb, Hemophilia Federation of America

Katie Verb HeadshotKatie Verb is the Manger of Policy & Advocacy at the Hemophilia Federation of America (HFA) where she helps drive the policy agenda, serves as a federal advocate, and assists states in advocating for those with bleeding disorders. With a family history of hemophilia, working on behalf of those with bleeding disorders has been especially rewarding for Katie. Prior to joining HFA, Katie was a member of the government affairs team at the Toy Industry Association working on regulatory issues involving consumer product safety and international trade. Before turning her interest to policy and advocacy work and moving to Washington, D.C., Katie worked in Chicago for a nonprofit that took a grassroots approach to educating and preparing women to run for office. She also helped found a nonprofit that provided educational and mentoring opportunities for women in the business world. Katie earned her law degree from Michigan State University in 2008, and has a B.A. in Political Science from Loyola University Chicago.

Randy Fenninger, National Blood Clot Alliance

Randy Fenninger was selected as Chief Executive Officer of the National Blood Clot Alliance (NBCA) effective August 25, 2014.  NBCA is a patient driven voluntary health organization focused on building public awareness about the public health problems associated with blood clots.  He had previously been an active volunteer, serving as a member of NBCA committees, the Board of Directors and two terms as president. Prior to assuming the CEO position at NBCA, he was a Principal in Creek Crossing Advisors, a healthcare consulting firm with offices in Washington, DC and Seattle.  He specialized in healthcare legislation, regulation and policy, representing health professionals, institutional providers and medical device manufacturers.  Randy has extensive experience working with Congress, the Executive Branch, independent regulatory agencies and public and private health plans.His background in public policy began at the American Law Division of the Congressional Research Service.  Mr. Fenninger then worked in government relations with the American Medical Association. Upon leaving the AMA he co-founded MARC Associates, a government affairs firm specializing in health policy, legislation and regulation.  He represented a wide range of clients before Congress, agencies in the Department of Health and Human Services and public and private health plans.  He also served as the firm’s president and has extensive management experiencePrior to joining Creek Crossing Advisors, he was a Senior Policy Advisor at Holland & Knight where he continued his specialized health policy practice. He earned a BA in Journalism from the University of North Carolina and his law degree from George Washington University.

Aiyana Maat ~ Protecting People and Preventing Complications of Blood Disorders

Mother and father figure with four children all wearing the same red shirt that says Maat Crew.“As a mother of a teenage son with Sickle Cell Disease one of my greatest passions and priorities is around making sure that all communities struggling with the varying impact of blood disorders have access to education, resources, and healthcare best practices that can ultimately improve and strengthen their quality of life. It has not always been easy but very worth it to advocate for and elevate the importance of education for children, adults, and families battling blood disorders.”

 Improving the Health of People with Disabilities

Focus Area 4: Improving the health of people with disabilities

Roberta Carlin, American Association on Health and Disability

Roberta 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.

Sara Struwe, Spina Bifida Association

In April, the National Office welcomed Sara Struwe as President and Chief Executive Officer, replacing Cindy Brownstein who resigned after 14 years of service to the organization. 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.

Family Liaison, Jeannette Mejias

Jeannette Mejias“Improving Access and Health Outcomes for Persons with Disabilities is an area that is overlooked and requires an integrated approach to ensure that all the collaborative areas are address in a care-management plan.  It is crucial to me as a caregiver and as a professional working in the system of care that we strive to ensure that individuals with disabilities experience seamless services from systems and coordinated care within a medical home and increased access to better health care systems to achieve the optimal health and overall potential.”

Family Liaison – Marlyn Wells – Family Voices Program Coordinator, F2F, North Carolina

Marlyn Wells daughter graduation“I am the parent of a young woman who had Down syndrome. In working with families and professionals focused on improving health outcomes, I see the benefit that persons with disabilities bring to communities beyond curb cuts and ramps. Inclusive and adaptive teaching strategies, for example, improve learning for all participants during swimming lessons, in a dance class, or during a science exploration at the museum. We are a poorer community when we exclude the social, structural and spiritual access necessary for persons with disabilities to expect and experience membership in a community of wellness and welcome.”

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