September 2013

In this Issue

Greetings from
the Friends of
NCBDDD Chair

Parent Corner

News from NCBDDD
September is National
Preparedness and
Newborn Screening
Awareness Month

Stop the Clot: A Patient
Forum about Blood Clots

The WHF Invites You to
“#HemoCare: Caring for
the Community”
Twitter Party

Congratulations
to the Cooley’s
Anemia Foundation

News from our Partners
CURE Grantee Discovers
Possible Treatment for
Dravet Syndrome
using Zebrafish

October is PACER’s
National Bullying
Prevention Month

Public Comment Period
Open for HHS
National Action Plan
for ADE Prevention

NCMHI Releases New
Medical Home Videos

October is National
Audiology Awareness
Month

Conferences

CHADD Regional
Conference

September 21
Dallas, TX

2013 Walking Summit
October 1-3
Washington, DC

2013 Southwest
Conference on Disability

October 8-11
Albuquerque, NM

AAP National Conference
& Exhibition

October 26-29
Orlando, FL

See more upcoming
conferences at
friendsofncbddd.org/events!

Webinars

CDC Public Health Grand
Rounds: Aging Safely and
More Independently

September 17, 1 pm ET

ACHA Webinar: Insurance
Update for the ACHA
Patient: Looking Ahead
to 2014

September 23, 7 pm ET

AAP Webinar: Congenital
Heart Defect Advances:
Screening and Early
Identification of CHD

September 24, 2 pm ET

CDC Public Health Series
on Hemoglobinopathies:
NHLBI Sickle Cell
Disease Guidelines

September 26, 2 pm ET

Recent Webinar!
HP 202 Progress Review:
Blood Disorders and
Blood Safety and
Healthcare — Associated
Infections
View Slides Here!

Save the Date! CDC’s
DBD Webinar Series:
Bleeding and Clotting
Disorders: Venous
Thromboembolism
and Cancer
October 10, 2 pm ET

Courses

NAPNAP Online Course:
Behavior Management
and Psychopharmacology
in Children with
Autism Spectrum Disorder

Health Insurance
Marketplace:Training
for Certified Application
Counselors

Funding
Opportunities

Tuberous Sclerosis Alliance
Rothberg Courage
Award in Research

LOI Deadline: September 23

ServASD FOA
Deadline: October 22

OAR Graduate Research Grant
Deadline: February 14

Calling for News from
NCBDDD Partners

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
Tory Christensen by October 4.
Photos and web links are encouraged!

Friends of NCBDDD
Executive Committee

Adriane Griffen,
Chair (twitter.com/adrianegriffen)
Craig Mason,
Vice Chair
Jeff Cohen,
Membership/Communications
Judit Ungar,
Member at Large
Cindy Brownstein,
Member at Large
Carolyn Mullen,
Member at Large
Alan Brownstein,
Member at Large
Mary Andrus,
Member at Large
Emil Wigode,
Advocacy Coalition Liaison
Annie Acosta,
Advocacy Coalition
Co-Chair
Randy Fenninger,
Advocacy Coalition Co-Chair
Roberta Carlin,
Past Chair

NCBDDD’s Social
Media Corner

Upcoming Twitter Chat
Topic: Newborn Screening
Discussant: Dr. Coleen Boyle,
NCBDDD
Partner: Dr. Richard Besser, ABC
Date: September 17
Time: 1-2 pm ET
How to Join: Follow #abcdrbchat, @abcdrchat and @DrBoyleCDC

Follow NCBDDD
Leadership on Twitter:

Dr. Coleen Boyle,
NCBDDD Director:
https://twitter.com/DrBoyleCDC

Dr. Althea Grant,
Epidemiologist
in the Division of
Blood Disorders:
https://twitter.com/DrGrantCDC

Dr. Scott Grosse,
Research Economist
in the Division of
Blood Disorders:
https://twitter.com/DrGrosseCDC

Dr. Georgina Peacock,
Developmental Pediatrician in
the Division of Birth Defects
and Developmental Disabilities:
https://twitter.com/DrPeacockCDC

Susanna Visser,
Epidemiologist
in the Division on Human
Development and Disability:
https://twitter.com/VisserCDC

Greetings from the Friends of NCBDDD Chair

Adriane Griffen, ChairThe Friends of NCBDDD will soon be accepting nominations for the Executive Committee. This is your chance to participate in guiding this national coalition and serve as a conduit between participant organizations NCBDDD. Consider putting forth a nomination as this is a unique opportunity to identify new partnerships and liaisons for you and your organization. The nomination committee will be soliciting nominations between September 20 and October 11. Nomination instructions will be shared on or before September 20. We look forward to hearing from you!

Adriane Signature
Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair

Parent Corner

Julie and Katie BeckettAs we move closer to October 1st and the implementations of the Affordable Care Act and the health insurance exchanges, we are seeing more cooperation from states.

I was watching television the other day and saw a commercial by Mass Mutual Insurance that showed a mom and her son. The mom was playing, admiring and discussing her lovable son who had spent 118 days in the NICU after his early birth. She told how the nurses all fought to be his caregiver and it showed her undressing him and taking off a brace to put his pajamas on and brush his teeth. The end of the commercial spoke of the importance of taking care of kids with special needs and to call Mass Mutual for coverage. This was a first for me. However, I realize now that insurance companies have to provide coverage under the ACA, and so they are soliciting a new type of clientele.

CMS and AHRQ have been working on establishing quality measures that will serve to monitor how hospitals, doctors and other health professions are providing quality services to all patients. This is an exciting time in which both parents and professionals need to provide input. As we move along, let’s make sure we are all engaged in this process. It will take years to work out the “bugs” in the new systems, but what a very exciting and dynamic time!

Julie Beckett

News from NCBDDD

September is National Preparedness and Newborn screening Awareness Month

National Preparedness Month
NCBDDD will be raising awareness of emergency preparedness for children and youth with special health care needs throughout September. Follow Dr. Georgina Peacock on Twitter (@DrPeacockCDC) to learn more about emergency preparedness, and join the conversation using the hashtag #NATLPREP. Look for a CDC 24/7 blog post on emergency preparedness during the week of September 9th. Visit http://emergency.cdc.gov/children/ for more information on emergency preparedness in children and youth with special health care needs, and to read stories from families who have experienced recent emergency situations.

Newborn Screening Awareness Month
This September, NCBDDD celebrates 50 years of saving lives through newborn screening. Follow Dr. Coleen Boyle on Twitter (@DrBoyleCDC) to learn more about the importance of newborn screening, and join the conversation using the hashtag #NBSMonth. Look for a Feature on newborn screening at www.cdc.gov the week of September 16th. For more information on newborn screening, visit the newly redesigned webpage, which includes links to newborn screening activities throughout CDC.

Stop the Clot: A Patient Forum about Clots

The National Blood Clot Alliance is hosting a patient forum entitled, “Stop the Clot: A Patient Forum About Blood Clots” on October 19, 2013, at Massachusetts General Hospital in Boston. This half-day program will provide information about preventing, treating, and managing blood clots and clotting disorders. Participants will learn about the risk factors, signs and symptoms of blood clots, understand the impact of clotting disorders on blood clots, gain knowledge about the safe use of blood thinners, and learn from people who have experienced a blood clot. For registration information or questions, please contact Judi Kaplan Elkin, Director of Regional Development and Education, National Blood Clot Alliance at 617-529-1054 or jelkin@stoptheclot.org.

The WFH Invites you to “#HemoCare: Caring for the Community” Twitter Party

NCBDDD is pleased to support the World Federation of Hemophilia (WFH) as it hosts, in partnership with Bayer, the very first global #HemoCare chat! Please join the “#HemoCare: Caring for the Community” Twitter party on October 1 at 11:00 am ET. WFH will be discussing tips on improving the lives of people with hemophilia and other inherited bleeding disorders, the patient–health care worker relationships and what great care looks like around the world.

For every 50 RSVPs, Bayer will contribute $1,000 to WFH’s Close the Gap Campaign. For every 50 tweets with #HemoCare included, Bayer will contribute another $1,000, up to a total of $10,000. Help by RSVPing here and by Tweeting, ”Help advance care for people living w/ #hemophilia. Join the Twtr pty 10/1 at 11:00 a.m. EST! RSVP here @wfhemophilia #HemoCare.”

Congratulations to the Cooley’s Anemia Foundation

NCBDDD, along with the Friends of NCBDDD, would like to extend warm congratulations to the Cooley’s Anemia Foundation; they recently received the Sultan Bin Khalifa International Award for Thalassemia Society of Excellence. The monetary award of $20,000 will be presented in October at the Thalassemia International Federation Conference in Abu Dhabi. Click here to learn more about the award.

News from our Partners

CURE Grantee Discovers Possible Treatment for Dravet Syndrome using Zebrafish

Dr. Scott C. BarabanIn a new paper published in Nature Communications, CURE grantee Dr. Scott Baraban, describes how he has taken the most common mutation in a sodium channel (SCN1A) found in patients with Dravet Syndrome and replicated it in a zebrafish, effectively creating a zebrafish model of the disease. Dravet Syndrome is a pediatric epilepsy that causes significant intellectual disabilities and impairs social development; its progression is severe and it is frequently drug-resistant.

In Dr. Baraban’s model, the zebrafish exhibited spontaneous, seizure-like behavior. Notably, the mutant fish displayed the same drug-responsiveness as human Dravet Syndrome patients – certain treatments were effective, while many were not. Dr. Baraban’s group used the fish in a high-throughput screen to find new drugs that may be effective for treating patients with Dravet Syndrome. They screened 320 FDA-approved drugs in this model and successfully identified one compound that suppressed spontaneous seizure activity and may be a promising lead toward treating Dravet Syndrome.

October is PACER’s National Bullying Prevention Month

More than 13 million children are bullied in America each year – nearly one out of every three students. October is National Bullying Prevention Month, which was created in 2006 by the Minneapolis-based PACER Center to raise awareness of the issue. Unite Against BullyingOctober is the time when educators, students, parents and community members unite to send an important message – that bullying is no longer acceptable. PACER’s National Bullying Prevention Center will take the lead Oct. 9, on Unity Day, when people across the country wear orange in a show of support for those who have been bullied. PACER offers a variety of free resources, including the websites TeensAgainstBullying.org for middle and high school students, and KidsAgainstBullying.org for younger children. Last year, more than 2 million people in 195 countries used the Center’s web-based tools to help prevent bullying in their communities. Learn more at PACER.org/bullying.

Public Comment Period Open for HHS National Action Plan for ADE Prevention

US-based groups are encouraged to provide comments on the draft HHS National Action Plan for Adverse Drug Event Prevention, which is now available for Public Comment through October 4. Please see Pg. 51-86 for the section pertaining to Anticoagulants. The draft Action Plan will be finalized once public comments have been reviewed/incorporated into the final document and ‘approved’ by the various HHS and other federal agencies (e.g., FDA, CDC, CMS, DOD, IHS, VA) involved in the effort.

NCMHI Releases New Medical Home Videos

AAP NCMHI logoThe National Center for Medical Home Implementation (NCMHI) is pleased to announce the release of the Fostering Partnership and Teamwork in the Pediatric Medical Home: A “How To” Video Series! As part of this series, three new and free instructional videos make the medical home easier to understand by showing pediatric practices how to implement team huddles, family advisory groups and care partnership support. Each video describes the strategy, reviews the benefits, and provides guidance on implementation in a practice setting. All three videos are now available on the NCMHI YouTube channel: 1) Creating Efficiency, 2) Building a Stronger Pediatric Medical Home and 3) Enhancing Collaboration with Families.

October is National Audiology Awareness Month

Over 36 million American adults have some degree of hearing loss. The statistics are shocking and even more so knowing that over half of those 36 million Americans are younger than age 65. Hearing loss is American Academy of Audiology Logoan increasing health concern in this nation that is often preventable. Taking time to see an audiologist for regular hearing screenings and knowing the signs of hearing loss can protect your hearing. The American Academy of Audiology is dedicated to increasing public awareness of audiology and the importance of hearing protection. We have created a variety of educational activities, posters, worksheets, and more for parents, teachers, and kids to use in support of this month’s celebration. Click here to “Find an Audiologist” in your area and make an appointment this October during National Audiology Awareness Month and National Protect Your Hearing Month to get your hearing tested.

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 Tory Christensen

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