March Friends of NCBDDD Newsletter

♦ Saving Babies

♦ Protecting People

♦ Helping Children

♦ General

♦ Connect with Us

♦ Submit Here

Saving Babies
World Defects Day

wdd logoThanks to the 12 organizing agencies and scores of other foundations, hospitals, providers, government agencies, individuals, libraries and parent groups, the first-ever World Birth Defects Day was a resounding success. The two calls-to-action were a Thunderclap and Twitter buzzday. The goal for the Thunderclap was 100 supporters with a stretch goal of 250.We crushed it, blowing past to 544 with a reach of over 1.1 million. Read more…

New NCBDDD Family Liaison, Sheri Romblad

beach“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.

protectingPeople@2x_background Protecting People
Stop the Clot Spread the Word TM Campaign Launches to Inform People about Blood Clots

stop the clotIn recognition of Blood Clot Awareness Month, celebrated in March each year, the National Blood Clot Alliance (NBCA) has launched a new public education campaign with the NCBDDD’s Division of Blood Disorders. The purpose of the campaign is to increase awareness about life-threatening blood clots and to urge people nationwide to ask themselves one potentially life-saving question: Could I be at risk for a blood clot? Read more…

Foundation for Women & Girls with Blood Disorders (FWGBD) Launches its First Quarterly e-Newsletter

foundation womenSince our inception in 2010, FWGBD has been become an important voice in the e education of healthcare providers about the fact that undiagnosed, untreated blood disorders in women and girls have medical consequences and unique issues at every life stage. Our popular live symposia at leading medical society meetings, including ASH, NASPAG, and THSNA, and timely webinars by top faculty have helped shape the conversation with their demonstration for the need to educate providers about the consequences and effects of blood disorders, as well as the benefits of proper and timely diagnosis, effective treatments and how the adoption of best practices impacts the lives of women and girls with blood disorders. Read more…

helpingChildren@2x_bacgroundHelping Children
New NCBDD Family Liaison, Jennifer Pineo

saving childrent“I understand the joys and challenges having children with Autism brings to a family. Working on projects that bring understanding and awreness 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. “

NCBDDD Welcomes FASD Partners

FASDOn February 26 and 27, NCBDDD welcomed approximately 40 partners representing the Fetal Alcohol Spectrum Disorders (FASD) Practice and Implementation Centers and National Partners. These grantees are developing new strategies to reach health care providers in the prevention of FASDs. In this design, grantees have been paired to develop discipline-specific approaches for influencing practice and systems change at the national level. A one-year planning period is being used to transition to this approach, and grantees are working to influence the practice of pediatricians, nurses, ob-gyns, social workers, family practice physicians and medical assistants. Photo caption: From left to right: Leigh Tenkku Lepper, University of Missouri; Tom Donaldson, National Organization on Fetal Alcohol Syndrome; Ellen Hutchins, Public Health Consultant; Sandra Gonzalez, Baylor College of Medicine; Anita Prewett, Mary Velasquez, and Kirk von Sternberg, University of Texas at Austin

[Click the image below for our birthday gifts to you! If the image does not appear below, go directly to content at: Help us celebrate by sharing far and wide.]

CDC Gift

CDC Public Health Grand Rounds, featuring NCBDDD

firemanTODAY! Tuesday, March 17 at 1pm EST.

Topic: Addressing Preparedness Challenges for Children in Public Health Emergencies

Location: Atlanta, Ga. Live broadcast on

Public health emergencies can happen at any time, anywhere. Natural disasters, epidemics, and terrorist attacks that have occurred in recent years have underscored the importance of local, state, and federal public health systems in preparing for potential health threats. Public health emergencies, such as Hurricane Katrina, the 2009 H1N1 influenza pandemic, and 9/11 have shown that children have different needs than adults, and require special attention, such as pediatric-focused care. However, responses to past events also show that the unique needs of children have not been adequately addressed in the planning process. Read more…

Family Reaction Panel Conference Call: Addressing Preparedness Challenges for Children in Public Health Emergencies

Immediately following a CDC Grand Rounds presentation on Addressing Preparedness Challenges for Children in Public Health Emergencies, the Friends of NCBDDD will host a national call featuring family leaders and families from within the Family Voices network to discuss the needs and roles of families in disaster/emergency planning. Families and friends are invited to participate in this discussion to share their perspectives and experiences. This discussion will:

  • help families increase their understanding of Grand Rounds
  • help professionals gain a better understanding of family knowledge and perspectives
  • help all partners involved in emergency planning work together to identify practical strategies and tools in emergency planning

WHEN: March 17, 2015, 2:00- 3:00pm ET
CALL INFORMATION: 866-951-1151, code 7307522

  • Bev Baker, Family Voices
  • Peg Kinsell, Statewide Parent Advocacy Network of NJ
  • Dawn Bailey, Raising Special Kids (AZ)
  • Adriane Griffen, Friends of NCBDDD, moderator

Submit questions to:


Webinar Save-the-Date: Preventing Hospital- Associated Venous Thromboembolism: Practical Strategies That WorkDr. MaynardHospital-associated venous thromboembolism (HA-VTE), which encompasses deep vein thrombosis (DVT) and pulmonary emboli (PE) occurring after surgery and hospitalization, is a major source of illness, death, and healthcare cost. While some HA-VTE occurs in spite of recommended prevention approaches, there are opportunities to improve VTE prevention at every medical center. Read more…
Connect with US
Executive Committee
Add NCBDDD Connect Badge to Your E-mail Signature:

To add the “Connect with NCBDDD” button to an e-mail signature follow the steps below:
1. Open Microsoft Outlook
2. Go to File > Options > Mail > Signatures
3. Right click the graphic below and select “copy”
4. Paste the graphic into your desired signature in the “Edit signature” field
5. Click on the graphic and then click the hyperlink icon in the top right of the “Edit signature” field
6. 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 acostalas@aucd.orgSend 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 4/6/2015. 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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