Friends of NCBDDD Fall 2017 Elections

Term: January 1, 2018 – December 31, 2019

Communications Chair

tanishaTanisha Clarke
tclarke@aucd.org

Tanisha Clarke serves as Senior Program Manager, Disability and Public Health, at the Association of University Centers on Disabilities (AUCD). With over 16 years of experience being of service to underserved populations, she brings a great passion for empowering students and young adults from different backgrounds and cultures, enhancing access for all persons to opportunities for achieving their full potential, and addressing the root causes of health and educational disparities. Tanisha’s responsibilities include management of capacity development activities and technical assistance for participating sites including: University Centers for Excellence in Developmental Disabilities (UCEDDs), Leadership Education in Neurodevelopmental Disabilities (LEND) Programs, and public health partners, under a cooperative agreement with the Centers for Disease Control and Prevention (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD). Other health promotion activities involve the creation of accessible health education information, support of coalitions, and training opportunities funded through foundation and other grant support. Tanisha earned a Master of Public Health degree with a concentration in Maternal and Child Health from the University of South Florida. She also holds a Bachelor of Arts degree in Psychology with minors in both public health and general business administration.

Membership Chair

dianafekberDiana Felner
felner@tourette.org
Vice President, Public Policy
Tourette Association of America

Diana provides strategic direction for and ensures the implementation of the Tourette Association’s public policy activities. With 20 years of experience in government and regulatory affairs, she will advance the Tourette Association’s mission of awareness, research and support with the federal government and key stakeholders in Washington, DC. Prior to joining the Tourette Association, Diana served as Director of Government Affairs for Bunge North America, Inc. and Head, Federal Government Relations for Syngenta. In these roles, she served as a Washington representative for these global multi-national corporations. She began her government and regulatory affairs career working in various roles at CropLife America, a trade association representing the agricultural chemicals and plant biotechnology companies. She holds a Bachelor of Science degree from Texas Christian University.

Secretary

Jjennifer pineoennifer Pineo
jsp@nhfv.org

Joining the nonprofit workforce in 2009 when her oldest Logan was first diagnosed with Autism, Jenn has jumped in with both feet.  She had to, as a mom to now 12-year-old Logan and 7-year-old MJ (also on the spectrum) her kids needed her.  Jenn is a lifelong resident of NH and is one of the foremost family experts in the field in NH. She began working at NH Family Voices as  Project Coordinator/Autism Council Liaison on the Improving Services for Children and Youth with ASD Grant.  That grant has completed and she is now working on other projects at NHFV including working with youth and families, needs assessments and other projects as they arise. Her passion for her kids and the issues that come along with parenting 2 children with disabilities has taken her far.  Jenn has a BS from Lyndon State Colleges; she is a 2008 Institute on Disabilities Leadership Graduate and she completed the NH Leadership in Neurodevelopmental Disabilities Program (NH LEND) at UNH in 2012.  In 2013 Jenn also completed the Parent Information Center Volunteer Advocate Training. She is also the NH Family Delegate to the Association of Maternal and Child Health Programs (AMCHP). Jenn is currently the Family Delegate for the National Center on Birth Defects and Developmental Disabilities (NCBDDD) in the thematic area of Helping Children with Autism and other related disabilities and is looking forward to the opportunity to be more involved with Friends of NCBDDD.

Member at Large

Allyson Perleoni
aperleoni@aap.org

Allyson Perleoni is a Policy Associate at the American Academy of Pediatrics (AAP), an organization of 66,000 primary care pediatricians, pediatric medical sub-specialists, and pediatric surgical specialists dedicated to the health, safety, and well-being of infants, children, adolescents, and young adults. Her work at the AAP involves both direct lobbying and regulatory activity on a diverse portfolio of issues including appropriations and budget, infectious diseases and vaccines, children with disabilities, school health, sports medicine and fitness, health information technology, and medical liability and risk management.

Prior to joining AAP, Allyson served as the Program Manager of Government Relations at the Health Information Management Systems Society Analytics (HIMSS Analytics), where she developed and enacted a government relations strategy for health information technology in their CapSite division. Allyson has also worked as a Graduate Assistant at the Women & Politics Institute at American University, and as a Team Leader for the Vermont Legislative Research Service. Allyson earned her B.A. in Political Science and Women’s and Gender Studies at the University of Vermont, and has lived in Washington, DC since 2011 while earning her M.A. in Political Science from American University.

Amy HaddadAmy Haddad
ahaddad@amchp.org

Amy Haddad is the director of policy and government affairs at AMCHP. In this role, she leads AMCHP’s work to advocate for Title V appropriations; she promotes AMCHP’s policy priorities, represents AMCHP in various policy coalitions, and supports the Legislative and Health Care Finance Committee. Prior to assuming this position, she served in the associate director of government affairs role for over three years.  Before joining AMCHP, Ms. Haddad served as the director of public policy for Children’s Cause for Cancer Advocacy and brings over seven years of Capitol Hill experience, including six years as legislative assistant to Rep. Lois Capps (D-CA). In addition, she spent over two years living in Tel Aviv as the country director of a small nonprofit organization. She holds a Bachelor of Arts degree from Emory University in Atlanta, Ga.

 

 

RickRaderRick Rader
habctrmd@aol.com

Dr Rick Rader is the Director of the Habilitation Center at the Orange Grove Center, Chattanooga, where he is responsible for the creation, implementation and evaluation of novel and innovative health programs for individuals with intellectual and developmental disabilities. He was the first appointed Special Liaison for Family Health Concerns at the President’s Committee for People with Intellectual Disabilities. Rick is a co-founder and past president of the American Academy of Developmental Medicine and Dentistry and currently serves as the VP for Public Policy and Advocacy. He serves on the Board of the American Association on Health and Disability. He is the Editor in chief of Exceptional Parent Magazine and has published over 300 articles in the area of health and disabilities. He has served as an adviser to five former Surgeon Generals in the area of health and developmental disabilities. He is the Emeritus Adviser to the Healthcare Innovations Exchange at the Agency for Healthcare Research and Quality at the US Dept of Health and Human Services. He is a member of the Global Medical Advisory Committee at Special Olympics International. He is a Fellow of the American Association on Intellectual and Developmental Disabilities. Dr. Rader was elected as a Distinguished Practitioner of the National Academy of Practice in Medicine. He is an adjunct professor of Human Developmental at the University of Tennessee – Chattanooga. He serves on the editorial advisory board at the Journal Medicine. Dr. Rader has been an adviser to Family Voices and Parent to Parent. He is a member of the Steering Committee of the Institute for Evidence Based Practice at the University of Texas Health Sciences Center – San Antonio. He conducts research in sensory processing disorders as well as mentoring undergraduate and graduate students in medicine, nursing, social work and allied health sciences. He is a member of the board of directors at the National Task Group in Intellectual Disabilities and Dementia Practice.

 

PeggyHelmQuest

Peggy J. Helm-Quest
HelmQuest@dhs.wisconsin.gov

 

 

 

  • WI Program for Children and Youth with Special Health Care Needs Health Promotion Consultant/WI Birth Defects Prevention and Surveillance Program Director
  • University of Wisconsin – Oshkosh, Oshkosh, WI    Bachelor of Science    1976 to 1981   Community Health Education/ Biology
  • University of Wisconsin – Oshkosh, Oshkosh, WI    Master of Education  1982 to 1984   Counselor Education
  • University of South Carolina – School of Public Health, Columbia, SC       Master of Health Services Administration – Public Health Emphasis      1991 to 1996   Public Health Management
  • Certified Public Health Educator – #3661.
  • La Follette School of Public Affairs – Center for Public Policy and Status of Women – Women and Government Program 2003

MAJOR PROFESSIONAL INTEREST(S)

Coordinate state MCH/CYSHCN program systems integration related to public health populations; programs affecting children with disabilities including Children and Youth with Special Health Care Needs; develop new initiatives and assure best/emerging practice; oversee contract administration for statewide programs affecting the MCH/CYSHCN populations –  including at-risk pregnant women and infants born with birth defects for prevention, early intervention, service support; and long term care; state policy development for child populations affected by mental health (ie., Autism, Developmental Disabilities, CYSHCN); on abuse, neglect, seclusion and restraint, resiliency and trauma informed practices; and Director of the Sate Birth Defects Prevention and Surveillance program.

PROFESSIONAL EXPERIENCE

2004 – Present
Children and Youth with Special Health Care Needs
Wisconsin Department of Health Services, Division of Public Health
CYSHCN Health Promotion Consultant; Birth Defects Prevention and Surveillance Program Director

1999 – 2004
Children and Youth with Special Health Care Needs
Wisconsin Department of Health Services, Division of Public Health
CSHCN Unit Supervisor

1996 – 1999
Wisconsin Medicaid
Wisconsin Department of Health Services, Division of Health Care Financing
Program and Planning Analyst 5

1995-1996
Gundersen Lutheran Clinic
La Crosse, Wisconsin
Administrative Resident

1991-1995
Gaston County Health Department
Gastonia, North Carolina
Allied Health Education Program Manager

1990-1991
Area Agency on Aging
Rock Hill, South Carolina
Agency Director

1988-1990
Union County Health Department
Monroe, North Carolina
Health Education Program Manager II

1985-1988
Brunswick County Health Department
Bolivia, North Carolina
Health Education Program Manager I

1984-1985
Kimberley-Clark Corporation
Neenah, WI
Health Counselor

1982-1984
Planned Parenthood – Fox Valley
Oshkosh, Wisconsin
Teen Health Program Counselor

National Presentations

  • Annual American Maternal and Child Health Programs Conference – Birth Defects Mentoring WIC Program – 2015.
  • NBDPN Birth Defects Wisconsin Stillbirth Services Program – 2013.
  • NBDPN Birth Defects Wisconsin Nutrition Consultant Network – 2009.
  • 129th Annual American Public Health Association Conference – Key Informant Interviews – 2001.
  • Annual American Maternal and Child Health Programs Conference – Transformation of CYSHCN Program -2000.
  • 1995 SOPHE Scientific Conference – Developing a Community Infrastructure and Support Network for the Prevention of Domestic Violence during Pregnancy.

 

NicolePrattNicole Pratt
npratt@spannj.org

Nicole Pratt a single working mom of two children, a daughter 22 and son 17 years old, who both have special health care needs. Nicole is a strong advocate for both her children and for other families who struggle to obtain appropriate education supports and healthcare services for their children. Nicole sits on several New Jersey State, national and local parent leader advisory committees/ boards that support/empower families and children.

Nicole works for The Statewide Parent Advocacy Network, (SPAN)  as a Senior Parent Professional  Trainer  educating parents and professionals, which include teachers, administration, and community organizations on an array of education along with health topics across New Jersey and nationally. Nicole is the Project Coordinator on the Fetal Alcohol Spectrum Disorder project coordinating trainings for professionals and support for women around healthcare messaging. In addition Nicole works on the Special Education Volunteer Advocates project as a Family Engagement Facilitator.

Nicole has a BS in Psychology and Masters in Teaching along with extensive training in Human Behavior/Positive Behavior Supports, Mental Health Facilitation and Trauma Informed.

Below is a list of various national, state and local advisory committee/boards:

  • National Center for Childrens Eye Health at Prevent Blindness America
  • American College of Rheumatology National Advisory Committee
  • NJ State Newborn Screening Advisory Review Committee
  • Hudson County Developmental Disability Advisory Committee
  • Hudson County Childrens Interagency Coordinating Council (on developmental disabilities and mental health for youth)
  • NJ state PerformCare Family committee (on developmental disabilities and mental health for youth)
  • Mercer County Boys and Girls club community advisory committee
  • PTO President at Mercer Special Services High School
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