November 2015

♦ News from NCBDDD Executive Committee

♦ Saving Babies

♦ Helping Children

♦ Protecting Chldrent

♦ Improving Health

♦ News from NCBDDD

♦ Connect with Us

♦ Submit Here

News from NCBDDD Executive Committee
Meet the New Members of the 2016-2017 Friends Executive Committee


Jennifer Bolden PitreJennifer Bolden Pitre, Family Voices

Jennifer Bolden Pitre is a Parent Leader and the Mother of youth with special health care needs. Jennifer is based in Cherry Hill, NJ where she works for Family Voices as the Program Coordinator on several Alliance for Innovation on Maternal and Child Health (AIMS) grants & also as the Family Liaison to the Friends of the National Center Birth Defects and Developmental Disabilities.

Communications Chair

Shannon HaworthShannon M. Haworth, Association of University Centers on Disabilities

Shannon M. Haworth is a Program Manager for the Public Health team at Association of University Centers on Disabilities (AUCD). Working under the supervision of the Director of Public Health she implements capacity development activities and technical assistance for the AUCD network, under a cooperative agreement with the Centers for Disease Control and Prevention (CDC) & National Center on Birth Defects and Developmental Disabilities (NCBDDD).


Member at Large

Patrick Johnson, American Academy of Pediatrics

Patrick 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.
Barbara KornblauBarbara Kornblau, Coalition for Disability Health Equity

Barbara L. Kornblau, J.D., O.T.R., FAOTA, is an attorney, a health policy wonk, founder of the Coalition for Disability Health Equity, and a Professor of Occupational Therapy at Florida A&M University, where she teaches by distance. She previously served as Director of Health Learning for the National Blood Clot Alliance under a grant from NCBDDD.


Kate TaftKate Taft, Association of Maternal & Child Health Programs

Kate Taft, MPH, is the Senior Program Manager for Children and Youth with Special Health Care Needs (CYSHCN) at AMCHP and assumes a lead role on issues surrounding CYSHCN, birth defects and developmental disabilities and early childhood. Specifically, she manages AMCHP’s grant portfolio and budget related to autism spectrum disorders and other developmental disabilities (ASD/DD).


 Friends Executive Committee 2016 2017 Winners

Save the Date for Two Friends Events!

Save the Date Friends announcement (002)Friends Quarterly Check In
Wednesday, December 2
2pm ET-3:30pm ET

Friends In Person Meeting
Tuesday, January 26, 2pm-6pm
Washington, DC

Read More…


Saving Babies
Advocative Legacies

By Kayte Thomas – NCBDDD Family LiaisonI’ve been a birth defects advocate for 10 years. My daughter Ashley came with me on a recent trip to D.C. so she could tell her story on her own. Ashley wrote out what she wanted to say by herself, and quickly learned that no matter how many times she practiced, it’s very different when there is an audience. She was impeccably poised despite her nervousness, and made a positive impression at every office we visited.
In all of my years of speaking with legislators, I’ve never scored a luncheon in the first meeting. Ashley did though! She struck up a conversation with Dr. Rodney Whitlock, Health Policy Director for Senator Chuck Grassley (R – IA), and found herself with an invitation because “4th grade lobbyists are the best”. And so there we sat over frozen yogurt, in between conversations about how her birth defects affect her and the wonders of Flemish Giant Rabbits (no really, Google them!), when I realized that this is precisely the moment I have waited for in my decade of advocacy. The moment where politics are irrelevant, where finances are off the table, where the people who influence policy literally sit down to talk to those impacted by it. I watched in awe and decided that I love a world where a 4th grade lobbyist can name her plush Democratic donkey “Rodney” – after her favorite Republican – and have no idea that there might be greater implications behind this decision. Suddenly, I realized that this is why advocacy is so important. This is why I value my role in the Saving Babies committee, because the efforts today create the realities of tomorrow. And I can’t wait to see what Ashley’s “tomorrow” looks like!

Protecting People
Reminder 2015 Healthcare-Associated VTE (HA-VTE) Prevention Challenge Accepting Submissions

The Centers for Disease Control and Prevention (CDC) recently announced an exciting opportunity to help protect patients from blood clots known as venous thromboembolism or VTE. As many as 900,000 Americans are affected by blood clots known as venous thromboembolism (VTE) each year and half of these are healthcare-associated.  An estimated 70% of healthcare-associated VTEs (HA-VTEs) are avoidable, yet fewer than half of hospitalized patients receive appropriate preventive treatment.  CDC is looking for solutions for improving HA-VTE prevention and invites you to enter the 2015 HA-VTE Prevention Challenge today. Read More…



helpingChildren@2x_bacgroundHelping Children
Safety & Autism: Helping Caregivers and Providers

Saftey and AutismJoin  University of Illinois-Chicago’s Institute on Disability and Human Development and the Chicago Children’s Advocacy Center for a free, 90-minute webinar on Monday, December 7. “Safety & Autism: Helping caregivers and providers talk about sexual abuse and prevention” will cover the basics of sexual abuse, strategies to keep children safe, and ways to make conversations about sex and safety easier for children with disabilities. This free webinar is possible by a grant from The Autism Program (TAP), and assistance from Midwest Regional Children’s Advocacy Center and the Department of Justice Office of Juvenile Justice and Delinquency Prevention.

Register for the webinar now.

Systemwide Solutions for Developmental-Behavioral Concerns

smiling babySystemwide Solutions for Developmental-Behavioral Concerns

Birth to 5: Watch Me Thrive!” has been promoting universal, broad-band developmental and social-emotional screening in children ages 0 to 5 years across the health care, early childhood education and social service sectors. With the U.S. federal government and AAP combining forces to promote periodic developmental-behavioral screening, the next step is for the U.S. to address its capacity crisis for providing high-quality early intervention and learning services. A new article in Pediatrics proposes that every U.S. state needs: 1) a family-friendly, screening and care coordination entity, 2) comprehensive, tiered, and equitable assessments for “at-risk” or referred children, 3) universal access to high-quality early learning or preschool programs, and 4) continuous accountability for the early detection process from birth to 5 years, and this includes an outcome-based metric for kindergarten readiness. Leaders in health, education, and social service sectors must boldly address our nation’s capacity crisis in a system-wide manner. US early learning (especially IDEA Part C) services must become more equitable, efficient, and effective so that the focus is always on the developmental–behavioral needs of the child.  For more information developmental–behavioral monitoring and training, visit the Learn the Signs. Act Early. Campaign at

Improving Health No BackgroundImproving Health
Public Health is for Everyone

Public Health is for Everyone is new, one-stop resource to increase the capacity of public health professionals to create programs that benefit entire communities, including people who have a disability. Users can search and browse disability and health related resources by their interests and professional needs. Resource topics include: Nutrition, Health care access, Physical activity, Emergency preparedness, Obesity, Accessibility, Tobacco, and general inclusion issues. Practical, hands-on resources such as field guides, factsheets, checklists, brochures and other tools are featured. To check out the new Public Health is for Everyone toolkit, please visit

Do you have a practical free resource to share? Submit a resource to further develop Public Health is for Everyone. Public Health is for Everyone was highlighted at the American Marketing Association Nonprofit Marketing Conference in July 2015 and in the Nation’s Health newsletter, October 2015 issue.

News from NCBDDD
Executive Committee
NCBDDD’s Social Media Corner
How to Add NCBDDD Connect Badge to E-mail Signature:
  1. To add the “Connect with NCBDDD” button to an e-mail signature follow the steps below:
  2. Open Microsoft Outlook
  3. Go to File > Options > Mail > Signatures
  4. Right click the graphic below and select “copy”
  5. Paste the graphic into your desired signature in the “Edit signature” field
  6. Click on the graphic and then click the hyperlink icon in the top right of the “Edit signature” field
  7. Be sure is listed in the URL box and hit OK


Submit Here
button to submit articles to AUCD 360 form News items may be submitted for consideration via email to Send in updates on conferences, meetings, special awards and journal or research announcements for the next edition of the Friends of NCBDDD E-Newsletter! Submit program highlights with a short summary of 150-200 words to Anna Costalas by 12/11/2015. Photos and web links are encouraged!!

AUCD | 1100 Wayne Avenue, Suite 1000, Silver Spring, MD 20910

The Friends of NCBDDD is a coalition of government and private sector participants who work together to enhance the mission and activities of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) in promoting child development; preventing birth defects and developmental disorders/disabilities; and enhancing the quality of life and preventing secondary conditions among people who are living with mental or physical disabilities, or a combination thereof. For any questions regarding this edition or previous editions please contact Anna Costalas.

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