May 2017

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News from Executive Committee
Dear Friends of NCBDDD,

Greetings for the Executive Committee! We hope everyone is having a great May.

Your Executive Committee has been keeping busy over the past month with a few activities. We continue our work to update the Friends of NCBDDD membership list and freshen up the website. We look forward to sharing the results of those efforts soon.

The Executive Committee is also planning for two upcoming Friends events. First, we will be scheduling a briefing with NCBDDD staff on the President’s FY 2018 budget request (set to be released the week of May 22). We’ll send an email in the coming days with additional information. Second, we are making plans for our second quarterly call of the year. Save the date for June 22nd at 3:00pm.

Thanks to everyone for all of your support of the Friends of NCBDDD. Please reach out with any questions or feedback.

Best,
Becky Abbott
Chair, Friends of NCBDDD  

Saving Babies
Zika Care Connect Launches

zikaIn late April, the CDC in collaboration with the March of Dimes launched Zika Care Connect, a new resource to help families affected by the Zika virus find specialty medical providers who can care for them. The resources currently provides information for 10 high-risk jurisdictions throughout the United States and its territories. Additional information can be found here and you can access online at www.zikacareconnect.org.

Dr. Honenin Highlights the Need to Remain Vigilant to Help Prevent Zika and Protect Babies

zikaOn May 15, Dr. Margaret Honenin, Chief of NCBDDD’s Birth Defects Branch and co-lead of the Pregnancy and Birth Defects Task Force with CDC’s Zika response, was featured the official blog of the Department of Health and Human Services’ official.  Entitled “Zika and Pregnancy: Protecting Babies, Protecting Yourself,” her blog post describes current Zika data and the most up-to-date steps for prevention. You can read the full blog post here.

Protecting People background imageProtecting People
HFA 4th Annual Congressional Reception

Hemophilia Federation of AmericaMay 24, 2017, 5:30 p.m. – 7:30 p.m. ET
Russell Senate Office Building, Room 485

Over two million Americans are affected by a bleeding disorder. Join us as we honor those who are championing the fight for patients’ access to treatment. HFA Champion Award Awardees are The Honorable Joe Kennedy III (Massachusetts) and The Honorable Brad Wenstrup (Ohio). RSVP / Even Flyer

helpingChildren@2x_bacgroundHelping Children
Guest Blog: The Importance of Including Children in Emergency Preparedness Planning

Jessica Franks and Eric Dziuban of DHDD’s Children’s Preparedness Unit children-emergency-workerswrote a guest blog article for the Spring 2017 edition of the Kansas Child Magazine. They highlight the importance of including children in emergency preparedness plans, and include many resources to help states and families prepare. Check out the article here!

Someone to Listen: Introducing the Family Support and Empowerment Program

The Child Neurology Foundation (CNF) Family Support and Empowerment Program (FSEP) offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. Along with offering relational support, Peer Support Specialists seek to empower families by sharing sound information and helpful resources.

Research has shown that one of the greatest threats to a caregiver’s resilience is isolation. When children have a chronic health condition, that isolation can be felt anywhere – whether the family lives in a big city or a small town. Having access to a person who has experienced this life, like a Peer Support Specialist, can be just what you need to keep moving forward. Since the program’s inception in early 2017, FSEP has reached families from 23 states and 22 countries! Let FSEP help you, too! Connect with an FSEP Peer Support Specialist today: www.childneurologyfoundation.org/FSEP. We aim to respond to all inquiries within 24 hours.

Do you know a parent with child or adolescent with ADHD? Are they seeking treatment and don’t know where to start?

The National Resource Center on ADHD: A Program of CHADD Ask The Expert webinar series will be hosting Dr. John Barton next month. Dr. Barton’s presentation “Behavioral Therapy: What it is and finding a therapist” will be on Tuesday, June 6th at 2:00 p.m. ET. Participants in this webinar will be able to: define and identify behavioral therapy; explain why behavioral therapy is important in addition to medication; explain what to look for in a behavioral therapist; and list to the steps to find a behavioral therapist. Dr. Barton will answer participant submitted questions during the webinar. For more information and to register visit the webinar registration site. Share this resource with people in your community!

New Infographic:  Life of a Teenager with ADHD

Check out NRC’s new infographic that compares the difference treatment makes in a typical day for a teenager with ADHD. Throughout the day, a teen coping with mechanisms and treatment experiences several positive feelings while a teen coping without help has a number of negative experiences.

 

New video: How to Start Eating Well When You Have ADHD

In this 3 minute video in the ADHD and Food video series, ADHD expert Dr. Roberto Olivardia, Clinical Instructor of Psychology at Harvard Medical School and Assistant Psychologist at McLean Hospital in Belmont, MA, gives tips on how someone with ADHD can start eating well and explains the science behind unhealthy eating.

Expert Panel on Improving Access and Affordability

1280px-US_CDC_logo.svgOn April 12th and 13th, the Child Development Studies (CDS) team hosted an expert panel meeting that included professionals from a variety of governmental, academic, and professional groups. The meeting facilitators used a systems-thinking approach to identify ways to improve access and affordability to children’s mental health care.

Rural Health Policy Brief

A CDC policy brief presents a selection of potential policies and practices that may help rural children with mental, behavioral, or developmental disorders (MBDDs) access behavioral health services. This piece is part of the Rural Health MMWR series, and relates to the paper published by CDS about children’s mental health in rural areas.

DHDD Quarterly Newsletter

We hope that you all have received and enjoyed the latest issue of DHDD’s quarterly newsletter! It featured out latest work such as the piece on children’s mental health in rural areas, as well as highlighting the Special Olympics and their Winter Games in Austria. If you did not get the newsletter in your email, please contact dhddodrequests@cdc.gov and we will make sure your name is added to the subscription list!

DHDD Awardee Meeting

NCHPAD2The Disability and Health Branch of NCBDDD’s Division of Human Development and Disability (DHDD) hosted their annual Awardee Meeting in late April. Their funded national and state programs came to Atlanta to share their work, learn from other programs successes, network among peers, and attend skill-building workshops. Here is a picture of a panel hosted by National Center on Health, Physical Activity, and Disability (NCHPAD) about iCHIP (Inclusive Community Health Implementation Package).

Early Hearing Detection and Intervention

FCHHClogo2015On May 2nd, Dr. Georgina Peacock (DHDD’s Director) and Marcus Gaffney (Early Hearing Detection and Intervention team lead) traveled to Washington, DC, to participate in a briefing luncheon hosted by the Friends of the Congressional Hearing Health Caucus. Georgina presented on CDC’s work in early hearing detection and intervention.

 

Improving Health No BackgroundImproving Health
 New Report: National Profile of Title V CYSHCN Programs

The Association of Maternal & Child Health Programs (AMCHP) is pleased to release the new “National Title V Children and Youth with Special Health Care Needs Program Profile!” In 2015-16, with support from the Lucille Packard Foundation for Children’s Health, AMCHP fielded a Children and Youth with Special Health Care Needs (CYSHCN) Program Profile survey to gain insight into Title V CYSHCN programs across the U.S. This report highlights results from the survey and provides insight into Title V CYSHCN program structure and strengths, roles in systems of care, CYSHCN program partnerships, financing of care for CYSHCN populations and emerging issues for CYSHCN programs. Click here to download the full report, including Executive Summary. For more information, visit AMCHP’s CYSHCN website.

UCP Releases “What Matters to You?” Focused on the Healthcare Outcomes of People with Disabilities

ucp.jpg“For individuals living with disabilities, the health care experience can often be overwhelming. From physical access to misunderstanding by medical and research professionals, it can come with its own unique set of challenges.

As a part of UCP’s “Speak for Yourself” initiative, they asked self-advocates in the disability community to share what mattered most to them when it came to their health, and what they would like doctors and health researchers to know about the disability experience. You can watch the video here and get involved in the conversation around health research and the health care experience by using #WhatMattersUCP on social media.”
Read More

 

News from NCBDDD
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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 6/10/2017. Photos and web links are encouraged!!

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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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