July 2016

♦ News from NCBDDD Executive Committee

♦ Saving Babies

♦ Helping Children

♦ Protecting People

♦ Improving Health

♦ News from NCBDDD

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News from NCBDDD Executive Committee
AUCD Announces the Including People with Disabilities: Public Health Workforce Competencies

PrintThe Association of University Centers on Disabilities (AUCD) would like to announce the release of the Including People with Disabilities: Public Health Workforce Competencies. The Competencies outline recent advances in knowledge and practice skills that public health professionals need to include people with disabilities in the core public health functions – Assessment, Policy Development and Assurance. The Competencies have been developed by a national committee comprised of disability and public health experts. Read more…

Communications Committee Update

The Communications Committee will be presenting on the Awareness campaign and tools on the September Quarterly call.

The goals of the Awareness program are to:

  • Increase awareness of NCBDDD at CDC and public health agencies
  • Increase communication with others beyond members of the Friends
  • Increase awareness of how your organization plays a role in public health
  • Increase the visibility of the group, highlight programs, and to support the mission of group

Read more…

Saving Babies
Passing of Stephen DeJoseph

mqdefaultCDC joins the FASD community in mourning the passing of Stephen DeJoseph. Stephen was 27 years old and died of unexpected cardiac complications on June 7, 2016. He shared his stories to help educate and enlighten people about living with FASD and was a strong supporter for individuals and families.

The family has set up a memorial fund in his name at the National Organization on Fetal Alcohol Syndrome (NOFAS). Donations can be made to the Stephen DeJoseph Memorial Fund (http://www.nofas.org/donate) which supports individuals living with FASD.

Representatives from CDC’s FAS Prevention Team participate in AAP Champion Training

FASThe American Academy of Pediatrics (AAP) hosted the inaugural meeting of the fetal alcohol spectrum disorders (FASDs) Regional Education and Awareness Liaisons (REAL) at AAP Headquarters in Elk Grove Village, Illinois from June 16-17, 2016. The 10 REAL champions represent each of the AAP districts from across the United States, Puerto Rico and Canada. These pediatricians serve in a volunteer capacity to increase awareness and provide support to pediatric clinicians as well as health systems decision makers to facilitate improved identification and care of children with FASDs. Read more…

NOFAS Affiliate Summit

The 10th Annual National Organization on Fetal Alcohol Syndrome (NOFAS) Affiliate Summit was held in Washington, DC on June 20-22, 2016. In attendance were representatives from members of the NOFAS Affiliate Network from across the country and Natasha Singh from the Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities. Also present were young individuals living with FASD who shared their stories. Read more…

Fragile X Syndrome Educational Materials Available

AAP logoJuly is National Fragile X Awareness Month. July 22 is officially recognized by Congress as Fragile X Awareness Day. Both serve to increase knowledge about one of the most common inherited forms of intellectual disability. The American Academy of Pediatrics and Centers for Disease Control and Prevention have developed new educational materials that address common myths about fragile X syndrome (FXS). One common myth is that girls cannot have FXS. Both girls and boys can have FXS and exhibit symptoms that range from mild to severe. Myth busters handouts for pediatric clinicians and parents are available at http://bit.ly/2862aRR. These “Fragile X Syndrome Myth Busters” also provide tips on obtaining a family history and when to seek a genetic evaluation.


Protecting People
Ideascale Forum on Hematological Disorders

We are requesting your participation in the IdeaScale Campaign “Hematological Disorders” sponsored by the Social Security Administration (SSA). We would like to solicit your feedback to help us further explore what effect, if any, treatment may have on the Listing of Impairments for determining when hematological disorders are disabling under the titles II and XVI disability programs.

We have extended the deadline for comments. Participants can provide comments on IdeaScale beginning Friday, July 8, 2016 to Friday, July 22, 2016. Read more…

ACA Coverage: Stories of the Newly Enrolled

Behind national statistics about Affordable Care Act (ACA) enrollment are women, young adults and families, including those raising children with special health care needs, who have unique stories to tell about enrolling in and receiving care through ACA health insurance coverage. As part of an AIM project (The Alliance for Innovation on Maternal and Child Health) awarded by the Maternal and Child Health Bureau to the Association of Maternal and Child Health Programs (AMCHP), Family Voices has collected stories through interviews with a diverse group of family leaders, ACA navigators and assisters, and individuals from across the U.S., residing in both Medicaid expansion and non-expansion states. Five stories were chosen that highlight the opportunities as well as the challenges of receiving ACA coverage. Read more…


helpingChildren@2x_bacgroundHelping Children
July: National Cleft and Craniofacial Awareness Prevention Month

Each year in the United States, more than 7,000 babies are born with a cleft lip with or without a cleft palate, or cleft palate alone. These conditions, along with other birth defects of the head and face, are called craniofacial birth defects. July is National Cleft and Craniofacial Awareness and Prevention Month, a great opportunity for people to learn more about these conditions. As part of this special month, read some of CDC’s stories from families affected by cleft lip and cleft palate. Throughout July, please be on the lookout for Twitter messages from NCBDDD’s Twitter handle, @CDC_NCBDDD. Thank you for your support to raise awareness of craniofacial birth defects!

Meet CDC’s Act Early Ambassadors for 2016-2018!

The current cohort of 45 Ambassadors represents 41 U.S. states and three territories. Be sure to lookup your Act Early Ambassador. Visit AUCD’s website to view an Ambassador roster and biographies.


Family Voices Provides Testimony at Hearing on Advancing Care For Exceptional Kids Act (ACE)

Photo of Maria Isabel Frangenberg Maria Isabel Frangenberg, representing Family Voices, addressed the Subcommittee on Health of the House Energy and Commerce Committee in its hearing to get comments from stakeholders about the draft ACE Kids Act (H.R.546). This legislation, sponsored by Representative Joe Barton (TX) and Kathy Castor (FL), and currently cosponsored by 213 House members, gives state Medicaid programs the option to establish health homes for children with complex medical conditions. It would provide two years of enhanced payments to states to help with implementation. The draft also requires increased quality reporting, transparency regarding payment across state lines, and guidance from the Centers for Medicare and Medicaid Services to states on best practices for payments across state lines. Read more…

Improving Health No BackgroundImproving Health
Project TENDR: Targeting Environmental Neuro-Developmental Risks

cropped-collage6HRLast year a group of nearly 50 leading scientists, health professionals and providers, and children’s health and disabilities advocates (including The Arc) came together out of concern over the growing link between toxic environmental chemicals and neurodevelopmental disabilities. This month, we issued a consensus statement under the banner of Project TENDR: Targeting Environmental Neuro-Developmental Risks. Read more…

News from NCBDDD
Executive Committee
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 http://www.cdc.gov/ncbddd/connect/index.html 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 acostalas@aucd.org. 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 8/11/2016. 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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