December 2017

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News from Executive Committee
Saving Babies
Helping Children
Protecting People
Improving Health
News from NCBDDD
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News from Executive Committee
Dear Friends of NCBDDD,

Happy Holidays! Despite the busy season, I hope that you find time to reflect on 2017 and prepare for the year ahead. The Executive Committee is grateful to all of the Friends for your support throughout the past year. Your efforts have been instrumental in advancing our shared goal to promote the mission of the National Center on Birth Defects and Developmental Disabilities (NCBDDD). I hope you will continue to be active in 2018!

I am pleased to report that we have a great group of new Executive Committee officers! These wonderful leaders (listed below) will begin a two-year term on January 1, 2018. You can find a full list of your 2018 Executive Committee here. The Friends is also welcoming a new cohort of NCBDDD Family Liaisons. More information on this accomplished group of parent leaders is below.

Finally, don’t forget to save the date for the upcoming in-person Friends meeting. The annual gathering will take place of Tuesday, February 13, 2018 from 3:30 pm to 5:30 pm ET at the Crystal Gateway Marriott in Arlington, Virginia. Additional details and registration link are below.

Again, my best wishes for a wonderful holiday. The Executive Committee looks forward to continuing to engage with you in the year ahead. Please reach out with any questions or suggestions. I always appreciate hearing from you.

Best,
Becky Abbott
Chair, Friends of NCBDDD
rabbott@marchofdimes.org

Save the Date: Friends of NCBDDD Winter In-Person Meeting – February 13, 2018

Please reserve time on your calendar to attend the Friends of NCBDDD’s winter in-person meeting. The meeting will take place on Tuesday, February 13, 2018, from 3:30 pm to 5:30 pm ET at the Crystal Gateway Marriott in Arlington, Virginia. The meeting will immediately follow the conclusion of the AMCHP 2018 Annual Conference. We hope to see many of you there! Preliminary Agenda

Introducing the Newest Members of the Friends of NCBDDD Executive Committee

We are pleased to introduce the six newest members of the Executive Committee. These leaders will begin their two-year term on January 1, 2018. A full listing of the 2018 Executive Committee is here.

  • Communications Chair: Tanisha Clarke, Association of University Centers on Disabilities
  • Secretary: Jennifer Pineo, New Hampshire Family Voices
  • Membership Chair: Diana Felner, Tourette Association of America
  • Member at Large: Peggy Helm-Quest, Wisconsin Department of Health Services
  • Member at Large: Allyson Perleoni, American Academy of Pediatrics
  • Member at Large: Nicole Pratt, The Statewide Parent Advocacy Network
Introducing the NCBDDD Family Liaisons 201 Cohort

Family Voices is pleased to announce the 2018 Family Liaisons to the Friends to NCBDDD. The Friends of NCBDDD is a coalition of government and private sector participants who work together to enhance the mission and activities of the Center for Disease Control (CDC), National Center on Birth Defects and Developmental Disabilities (NCBDDD) in identifying the causes of birth defects and developmental disabilities; helping children to develop and reach their full potential; and promoting health and well-being among people of all ages with disabilities, including blood disorders.
Read more
I Meet the Family Liaisons

New to the Friends?

Have you recently joined the Friends of NCBDDD listserv? If so, please contact Membership Chair Sara Lyons (slyons@naccho.org) so that you can be added to our Membership Directory. Thank you for supporting the mission of Friends of NCBDDD!

 

Saving Babies
January is Birth Defects Prevention Month – Join the Effort to Raise Awareness!

January is the month when we unite to raise awareness of birth defects, their causes, and their impact. We hope you can join CDC in efforts to amplify that message. What can you do? Join the #Prevent2Protect Thunderclap that will go live on January 10, 2018. Share your #1in33 story about how birth defects have effected your life. Finally, share how you plan to prevent infections during pregnancy using the hashtag #Prevent2Protect. You can learn more about these efforts and other opportunities to engage here.

MMWR – A comprehensive description of the health and development of children aged 19-24 months who were born with microcephaly during the 2015 Zika virus outbreak- Brazil, 2017

On December 14, CDC released its first report on the severe and long-term health and developmental challenges of children of congenital Zika virus in children with microcephaly in northeastern Brazil. These children are part of the Zika Outcomes and Development in Infants and Children (ZODIAC) investigation, a collaborative study with the Brazilian Ministry of Health of infants 19-24 months old who had laboratory evidence of Zika virus at birth.  Read more…

 

Protecting People background imageProtecting People
Sickle Cell Disease Update: New Article Release “CDC Public Health Grand Rounds: Improving the Lives of Persons with Sickle Cell Disease” Published in CDC’s Morbidity and Mortality Weekly Report (MMWR)

doctorandpatientIn November 2016, CDC hosted a Public Health Grand Rounds (PHGR) session on “Improving the Lives of People with Sickle Cell Disease,” which is a genetic (inherited) blood disorder causing severe pain and other serious health problems. This PHGR session focused on what we know about sickle cell disease (SCD) and how far healthcare providers, researchers, and the SCD community have come in understanding SCD and treating people with the condition. The PHGR session was published as an article in CDC’s Morbidity and Mortality Weekly Report (MMWR), CDC’s primary vehicle for publishing public health information and recommendations. Read the full MMWR article on the PHGR session here.

International Conference on Stigma

Stigma, when associated with HIV, another medical condition, mental illness or disability, prevents a person from seeking evaluation and treatment, disclosing the diagnosis to those most likely to provide support, and following treatment guidelines. Health related stigma destroys human dignity. The 8th Annual International Conference on Stigma took place at Howard University on Friday November 17, 2017 at the Blackburn Center. Conference footage is available by the webcast link off the home page. The 9th Annual International Conference on Stigma will be held on Friday November 16, 2018.

 

helpingChildren@2x_bacgroundHelping Children
Would you like to be a CDC “Learn the Signs. Act Early.” Ambassador?

AUCD, the CDC, and HRSA are excited to announce the RFA for a new 2018-2019 cohort for the Act Early Ambassadors: State and Territorial Liaisons to CDC’s “Learn the Signs. Act Early.” Program. Please see the Act Early Ambassador Program overview below, and follow the link below to view and download the request for applications. Read more…

Medications used in the treatment of ADHD

Which medications have been FDA-approved to treat the core symptoms of ADHD?  Check out the latest medication chart from the National Resource Center on ADHD which includes a list of medications for ADHD grouped by class, brand names with links to the medication guides as well as to generic information if available, and the delivery, duration, form, dosage and side effects of the medications.

Subscribe to the NRC’s YouTube Channel

Over 100 videos on ADHD topics can found on the National Resource Center on ADHD’s YouTube channel, Help for ADHD.   The latest video, What to do when your child with ADHD is bullied, features a licensed speech and language pathologist, Anna Vagin, PhD, and personal coach, Caroline Maguire, ACCG, PCC who discuss the reasons why children are bullied, and the skills, tools and strategies than can help to reduce the likelihood of being bullied.

Improving Health No BackgroundImproving Health
 Funding Opportunity: The Future is Now Seed Grants

Easterseals and the University of Illinois-Chicago Family Support Research and Training Center (FSRTC) announces a Request For Applications for community based organizations interested in implementing The Future is Now: A Future Planning Training Curriculum for Families and Their Adult Relatives with Developmental Disabilities, an evidence-based educational program aimed at helping individuals with disabilities and their families plan for the future. Three (3) seed grants in the amount of $5,000 each will be awarded to community-based organizations that provide services and supports to people with disabilities and their families. Learn more…

Identifying Barriers to Breast Health – Access Survey

Breast cancer is a major public health concern for all women, including women with disabilities. Unfortunately, women with disabilities often face physical, cultural and attitudinal barriers when they seek breast health care services. To better understand the barriers women with disabilities face when they seek breast health services, American Association on Health and Disability (AAHD) and Florida Agricultural and Mechanical University (FAMU) have launched a confidential on-line survey to learn more about these barriers. AAHD encourages women with disabilities to take the quick online survey at http://bit.ly/WWDBrCa. The survey will be live through mid-January.


News from NCBDDD
Guide to Community Preventive Services and Disability Inclusion

NCBDDD Partner Alerts have transitioned to GovDelivery, an electronic communication technology that provides its services to over 1,800 government organizations in Europe and in the United States. By using GovDelivery to distribute NCBDDD Partner Alerts, NCBDDD will use the platform in an effort to better engage with you, our valued partners, as well as keep you well informed on Center activities. Haven’t subscribed yet? Simply click here. When the new window opens, enter your email address, and click “submit”. When the above process is complete, you are subscribed for future NCBDDD Partner Alerts delivered via GovDelivery!

Social Media Corner
Please Add NCBDDD Connect Badge to Your E-mail Signature:
  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. 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

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Submit Here
Do you have an update or event you would like to share with the Friends of NCBDDD? Newsletter items may be submitted for consideration via email to acostalas@aucd.org. Send 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 1/10/2018. Photos and web links are encouraged!!

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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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