October 2013

In this Issue

Greetings from
the Friends of

Parent Corner

News from our Partners

Autism Speaks Announces
New Senior Vice
President and Head
of Medical Research

Tuberous Sclerosis
Alliance Announces
Updated Clinical
Consensus Guidelines

News from the AAP

NACCHO’s National
Model Practice Awards
Program Opening Soon

APHA Disability Section
Recruiting for Student
Webinar Series

CURE Awards $2 Million
to Grantees for Research
in the Epilepsies

Danbury Hospital Nurses’
CHDSP Presents Poster at
AWHONN National Conference

Update from Avery’s Angels ® Gastroschisis Foundation


AAP National Conference
& Exhibition

October 26-29
Orlando, FL

CHADD International

November 7-9
Crystal City, VA

6th International Conference
on Birth Defects and Disabilities

in the Developing World
November 10-13
Cebu, Philippines

AUCD 2013 Conference
November 17-20
Washington, DC

AMTA 2013 Conference
November 21-24
Jacksonville, FL

See more upcoming
conferences at


Congenital Heart Defect
Advances: Life Long Care
for Patients with CHD

October 22, 2 pm ET

ACHA Webinar:What
Adults Living with Ebstein’s
Anomaly Need to Know

October 24, 7 pm ET

See more upcoming
webinars at


NAPNAP Online Courses:
Six pediatric pharmacology
courses will offer a review
and updates on therapeutic
benefits, potential risks of
GI, Respiratory and other
medications prescribed for
children, including efficacy,
safety and prescribing recommendations.


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 November 1.
Photos and web links are encouraged!

Friends of NCBDDD
Executive Committee

Adriane Griffen,
Chair (twitter.com/adrianegriffen)
Craig Mason,
Vice Chair
Jeff Cohen,
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
Randy Fenninger,
Advocacy Coalition Co-Chair
Roberta Carlin,
Past Chair

NCBDDD’s Social
Media Corner

Leadership on Twitter:

Dr. Coleen Boyle,
NCBDDD Director:

Dr. Althea Grant,
in the Division of
Blood Disorders:

Dr. Scott Grosse,
Research Economist
in the Division of
Blood Disorders:

Dr. Georgina Peacock,
Developmental Pediatrician in
the Division of Birth Defects
and Developmental Disabilities:

Susanna Visser,
in the Division on Human
Development and Disability:

Greetings from the Friends of NCBDDD Chair

Adriane Griffen, ChairDear Friends,

Voting is now open for the Friends of NCBDDD Executive Committee! Please cast your vote for the Secretary position and three Member at Large positions (Term: January 1, 2014 – December 31, 2015). Please see instructions for voting below.

Voting Instructions

  1. Read information about the nominees, including bios and statements at www.friendsofncbddd.org.
  2. Please use the following link to find the ballot and cast your vote: http://www.surveymonkey.com/s/Friends_Election
  3. Cast only one vote per organization. The first vote received from an organization will be the vote that is counted. Votes will be accepted from Thursday, October 17 to Tuesday, November 12.

The new Executive Committee members will be announced in November via the listserv, website and December e-newsletter. Please contact Tory Christensen at tchristensen@aucd.org with questions.

Finally, I wanted to mention that we will send out a separate newsletter issue with updates from NCBDDD as the federal government just re-opened today. In the meantime, please let us hear from you and vote!

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

Parent Corner

Julie and Katie BeckettFamilies know the importance of early identification and early access to intervention as it can assist kids who may fall behind for numerous reasons. As a founding member of Family Voices, I know that we reach out to many partners to explore how to improve this access.

One such partner is Reading Is Fundamental, a program that provides books and assistance to parents of young children. Often, their staff find children that do not have access to books that interest them, and discover many parents that do not read to their children because of time limitations or their own inability to read.

NCBDDD has also been involved in a project known as Legacy. This project mainly works with inner city families that have limited resources. Families are provided with an opportunity to learn together in an environment that is open and knowledgeable, which helps to cement strong bonds in communities that seem to be isolated from other resources.

Teaching families the importance of reading to children at an early age gives those families who cannot read the tools they need to learn to read and enjoy the gift of reading. This type of early intervention provides a lifelong resource to those who have limited resources.

In these fiscally challenging times, it is important that we all work together to spread the word that early identification/early access and programs such as Legacy and Reading is Fundamental are critical to the welfare of our children and important to our nation’s future.

Family Voices will be reaching out to these partners. We recognize that our children with and without disabilities or special health care needs are often spending too much time with the television and various video resources. We need to start replacing some of those times with books! Whether in hospitals, clinics or waiting for that appointment to begin, reading can fill those hours while we wait.

Julie Beckett

News from our Partners

Autism Speaks Announces New Senior Vice President and Head of Medical Research

Paul Wang HeadshotAutism Speaks, the world’s leading autism science and advocacy organization, has named physician-scientist Paul Wang, MD, to the position of senior vice president and head of medical research. He will be responsible for innovating Autism Speaks’ medical research portfolio with a specific focus on innovating clinical trial capabilities.

“Dr. Wang’s history as a developmental-behavioral pediatrician brings years of experience understanding and identifying treatments for children with developmental disabilities to Autism Speaks,” said Liz Feld, President of Autism Speaks.

Dr. Wang joins Autism Speaks from Seaside Therapeutics, where he served as vice president of clinical and medical affairs, and oversaw the company’s groundbreaking arbaclofen programs in autism and fragile X.

Tuberous Sclerosis Alliance Announces Updated Clinical Consensus Guidelines

TSAlliance LogoThe Tuberous Sclerosis Alliance (TS Alliance) recently announced newly updated clinical consensus guidelines for the diagnosis, surveillance and management of tuberous sclerosis complex (TSC). To communicate the recommendations to healthcare professionals, the October issue of Pediatric Neurology includes two peer-reviewed papers detailing the new guidelines: “Tuberous Sclerosis Complex Diagnostic Criteria Update: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference” and “Tuberous Sclerosis Complex Surveillance and Management: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference.”

Darcy A. Krueger, MD, PhD, of Cincinnati Children’s Hospital Medical Center, and Hope Northrup, MD, of The University of Texas Medical School at Houston, wrote both papers in Pediatric Neurology. They also served as co-chairs of the TS Alliance’s 2012 International TSC Consensus Conference, which involved 79 TSC experts from 14 countries to develop the new guidelines. The guidelines, as well as links to the Pediatric Neurology papers, are available here.

News from the AAP

Online Toolkit for Diagnosis and Management of Children with an FASD
AAP logoThe American Academy of Pediatrics (AAP) announced the launch of its Fetal Alcohol Spectrum Disorders (FASD) Toolkit, a comprehensive resource that serves as the framework for the medical home management of a child with an FASD. It provides tools and resources for primary care providers to be better equipped to meet the special needs of these children and families. The Toolkit includes fact sheets, definition of key terms, commonly used resources, an algorithm for the identification and management of children with FASDs, as well as medical and education tools.

Newborn Hearing Screening Tools Available
The AAP Task Force on Improving Newborn Hearing Screening, Diagnosis and Intervention has developed five tools/resources for medical home providers to improve care around early hearing detection and intervention (EHDI), including reducing loss to follow-up/documentation. The percentage of infants screened for hearing loss increased from 52% to 95% since it was added to the recommended uniform screening panel. However, almost half of the children who “do not pass” lack a documented diagnosis. An infant who doesn’t pass has a potential developmental emergency. Without active assistance of the medical home, the infant may be considered “lost” in the EHDI system.

Learning Disabilities: What Parents Need to Know
Learning Disabilities: What Parents Need to Know, a patient education brochure authored by the AAP Council on Children with Disabilities, has recently been released. This brochure provides information that includes ways to discern whether a child has a learning disability and, if so, how families, in partnership with their pediatrician and other health care professionals, can best help their child to succeed in school, work, and relationships.

Congenital Heart Defect Advances Webinar Series
The AAP is pleased to announce a new Webinar series, Congenital Heart Defect Advances: From Screens to Teens and Beyond. The three-part series covers advances in both the science and care management of young patients with a congenital heart defect and tackles questions about newborn screening, care transition for older youth and the nuances of neurodevelopmental outcomes. This series is free, but pre-registration is required. Click here to learn more.

NACCHO’s National Model Practice Awards Program Opening Soon

NACCHO LogoNACCHO’s Model Practice Program nationally honors and recognizes outstanding local public health practice and shares the outstanding practices through the Model Practices Database. By submitting a practice, local health departments (LHDs) contribute to the overall improvement of public health through evidence-based best practice methods. NACCHO will accept Model Practice applications through Oct. 31. NACCHO’s Health and Disability project especially encourages applications from programs designed to improve the health of people with disabilities. Click here to learn more, and send questions to Sarah Yates at syates@naccho.org. Apply, and you and your local health department can be a winner!

APHA Disability Section Recruiting for Student Webinar Series

APHA Disability Section MeetingThe American Public Health Association (APHA) Disability Section will be conducting the second year of student webinars, sponsored by The Arc. The purpose of the webinars is to promote learning, to provide an opportunity for students to share their research and to network with leaders in the field. The webinars focus on disability and health, so all students within the disability section can participate! Click here to learn more about past student webinars.

The APHA Disability Section is currently looking for students that would like to present their research this year. Each webinar will feature 3 presenters, each giving a 15 minute presentation. The webinar will conclude with a Q&A session. If you are a student or know of any students that might be interested in presenting, please contact Alicia Dixon-Ibarra at dixona@onid.orst.edu or (814)934-0757.

CURE Awards $2 Million to Grantees for Research in the Epilepsies

CURE logoCitizens United for Research in Epilepsy (CURE) is proud to announce the most recent recipients of research grants awarded this year. CURE congratulates these esteemed researchers and is proud to be able to facilitate these exciting new research projects targeted at finding cures for the epilepsies. The recipients are listed below.

Challenge Award: John Huguenard, PhD and Jeanne Paz, PhD (Stanford University)*, Janice Naegele, PhD (Wesleyan University); Prevention of Acquired Epilepsies Award: Detlev Boison, PhD (Legacy Emanuel Hospital and Health Center)*, Amy Brooks-Kayal, MD (University of Colorado Denver), Shelley Russek, PhD (Boston University School of Medicine), Raimondo D’Ambrosio, PhD (University of Washington); SUDEP: Gordon Buchanan, MD, PhD (Yale University)*, David Paterson, PhD (Boston Children’s Hospital)*, Else Tolner, PhD and Arn van den Maagdenberg, PhD (Leiden University Medical Center [LUMC] the Netherlands); Pediatric Epilepsies: Edward Cooper, MD, PhD (Baylor College of Medicine)*, Timothy Simeone, PhD (Creighton University)*.

Awards denoted with an (*) are made possible by the generous support of individuals, families, foundations and corporations. Click here for more information on the recipients and awards.

Danbury Hospital Nurses’ CHDSP Presents Poster at AWHONN National Conference

The Danbury Hospital Nurses’ Congenital Heart Disease Screening Program (CHDSP) presented a poster at the Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN) 2013 National conference in Nashville Tennessee. Colleen Loyot, RNC, Manager of the NICU and Cindy Palmer, RNC, Assistant Manager of Family Birth Center were selected to present their poster titled Fast Track Initiation of a Congenital Heart Disease Screening Program. During the June 15-19 conference, their poster was reviewed by over 3000 nurses from around the United States and Canada.

Inspired by mother and advocate, Marie Hatcher, as well as encouraged by hospital management, Loyot and Palmer lead a team that implemented a CHDSP program in just seven weeks. The successful program has screened 100% of babies born at Danbury since the first day of implementation. Danbury’s successful results were reported to state legislature as part of the testimony which supported passage of Assembly Bill #56. Unfortunately, CHDSP is not yet universal throughout the country. Loyot and Palmer were honored to be chosen to present and share their CHDSP journey.

Update from Avery’s Angels ® Gastroschisis Foundation

Avery’s Angels ® Gastroschisis Foundation (AAGF) has enjoyed continued success this year! In February AAGF attended the NBDPN Conference in Atlanta, this time with additional representatives from its GA hub and headquarters. AAFG also hosted Easter celebrations in NC, MI and Texas, hosted Mother’s Day NICU events in OR, CO, GA and NC and held events in AZ, CA (2), CO, GA, IL, KS, KY, LA, MA, NM, NC, OR, TX (2), TN for Awareness Day with 21 states recognizing July 30th as the Official Gastroschisis Awareness Day. In addition, AAFG has hosted family fun days, teas, luncheons, runs, walks and other events in Australia, the UK, Fl, OH, PA and NM. AAFG will be closing up the year with Ronald McDonald House Give-Back dinners that have been or are scheduled in AZ, Ma, Ga, TX, TN, KS, IL, OR and NC. In January, AAFG will partner with the LJS Foundation in the UK to promote a research opportunity with families and will start planning and seeking funds for AAFG’s Symposium for Gastroschisis slated for Sept/Oct of 2014.

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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