Press Kit - The CJ Foundation for SIDS

Transcription

CJ Foundation for SIDS
Press Kit
FACTS........................................................................................................pg. 2 - 4
PRESS........................................................................................................pg. 5 - 8
GRANTS.................................................................................................pg. 9 - 10
RESEARCH GRANTS...................................................................pg. 11 - 12
TIP SHEET..................................................................................................pg. 13
BOARD OF DIRECTORS
& STAFF.......................................................................................................pg. 14
FACTS
Who We Are
T
he CJ Foundation is a national non-profit organization devoted to eliminating the tragedy of sudden
unexpected infant and early childhood deaths, supporting grieving families, advancing medical
research, furthering parent and professional education and advocating for the health and survival of all
children.
Recognized as one of the leading SIDS organizations in the country, the CJ Foundation was founded in
1994 by Joel and Susan Hollander in memory of their daughter, Carly Jenna, who died from SIDS in 1993.
Since its inception, the CJ Foundation has provided millions of grant dollars in support of SIDS research
and community programs throughout the nation.
Through a variety of initiatives, the Foundation educates parents and all who care for infants on the steps
they can take to reduce the risk of a baby dying from SIDS or other sleep-related deaths. The Foundation
gives voice to SIDS (Sudden Infant Death Syndrome), SUID (Sudden Unexpected Infant Death) and SUDC
(Sudden Unexplained Death in Childhood) families who suffered an unexpected and unexplained loss and
creates a healing, supportive community whose overriding goal is for no other families to suffer.
The CJ Foundation’s medical research grants, risk-reduction and bereavement support grants, education
materials, outreach and advocacy efforts and support services are the foundation for one day eliminating
SIDS, SUID and SUDC while ensuring that affected families are comforted and supported in their grieving
process.
What We Do
• Operate a competitive grant program which advances the field. The medical research grants are
evaluated by the Foundation’s Medical Advisory Board which is comprised of prominent researchers
and other experts. The program grants are evaluated by leading SIDS, SUID and SUDC professionals
and advocates.
• Distribute no and low- cost, high-quality, educational materials to childcare providers, hospitals and
healthcare providers.
• Lead advocacy efforts in Washington, D.C.; assist families to participate at the federal level and guides
them in local advocacy efforts.
• Foster open communication with and is a resource for medical examiners, coroners, first responders and
law enforcement.
• Educate parents and families and provide accurate, relevant and up to date information.
• Provide compassionate bereavement support and/or resources for support for families.
• Facilitate and provides thought leadership at a national level.
The CJ Foundation For SIDS • Imus-WFAN Pediatric Building • 30 Prospect Avenue, Hackensack, NJ 07601 • Tel: 888-8CJ-SIDS • Web: www.cjsids.org
FACTS
Unexplained Infant Deaths
My baby’s death certificate indicates cause of death as undetermined. Is this SIDS? Why isn’t it being called SIDS?
F
ewer and fewer medical examiners and coroners are using SIDS (Sudden Infant Death Syndrome)
as a cause of death. While the definition of SIDS is: "sudden death of an infant under one year of
age which remains unexplained after a thorough case investigation, including performance of a complete
autopsy, examination of the death scene and review of the clinical history," the word "syndrome"
incorrectly implies a diagnoses or illness, when it is in fact a diagnosis of exclusion. There are no
clinically significant findings that indicate cause of death.
Five years ago, your baby’s cause of death probably would have been ruled SIDS. The fact that there
is no national standard for terminology for these types of infant deaths AND that medical examiners/
coroners are increasingly reluctant to use SIDS as a cause of death has led to parental and bureaucratic
confusion. The CDC’s National Center for Health Statistics lists ALL of the following as definitions of
SIDS for coding purposes:
•
•
•
•
•
•
•
•
•
Sudden Death in Infancy or SDII
Sudden Infant Death or SID
Sudden Unexplained Death or SUD
Sudden Unexplained (unexpected) Death in Infancy or SUDI
Sudden Unexplained Infant Death or SUID
Sudden plus (Unexpected) or (Unattended) or (Unexplained)
Death plus (Cause Unknown) or (in Infancy) or (Syndrome)
Infant Death plus (Syndrome)
Presumed SIDS, Probably SIDS, Consistent with SIDS
In addition, anecdotally we know infant death certificates have also ruled: "Cause unknown with the
contributing factor of co-sleeping" and "Undetermined but cannot rule out suffocation from unsafe
sleeping environment," and other variations on this theme.
Parents should also be aware that when no autopsy is performed—for whatever reason: personal/
religious beliefs or your area doesn’t have the staff/funding—or there is not a thorough death scene
investigation, in all likelihood SIDS will not be ruled as the cause of death. We know these changes
are difficult for parents who identify as "SIDS parents. To hear that the term SIDS as a cause of death
is sun setting is upsetting. We also know that parents whose baby’s death certificate says SUID or
Undetermined don’t necessarily identify as SIDS parents.
The CJ Foundation is here to help all parents who experience a sudden, unexpected death of an infant.
We are an authoritative source of information on the latest in research findings and a leader in advocacy
efforts in Washington. Whether you need a bereavement kit, help finding support services or assistance
requesting an autopsy report. We are here for you; you are not alone. Call or email us today.
FACTS
Defining SIDS, SUID, & SUDC
SIDS
(Sudden Infant Death Syndrome): Is defined as the sudden death of an infant under one
year of age which remains unexplained after a thorough case investigation, including
performance of a complete autopsy, examination of the death scene and review of the clinical history. SIDS
is a diagnosis of exclusion, assigned only once all known and possible causes of death have been ruled out.
SUID
(Sudden Unexpected Infant Death also known as sudden unexplained infant death): is
defined as the sudden and unexpected death of an infant in which the manner and cause of
death are not immediately obvious prior to investigation. How are SUID and SIDS different? SUID can be
caused by metabolic disorders, hypothermia or hyperthermia, neglect or homicide, poisoning, or accidental
suffocation. Some SUIDs are ruled SIDS, others are sleep-related deaths but ruled Undetermined.
SUDC
(Sudden Unexplained Death in Childhood) is defined as the sudden and unexpected
death of a child over the age of twelve months, which remains unexplained after a
thorough case investigation including performance of a complete autopsy, examination of the death scene,
and review of the clinical history. Similar to SIDS, SUDC is a diagnosis of exclusion - assigned when other
causes of death have been ruled out. SUDC is not new, but it is rare, with a reported incidence of 1.2 deaths
per 100,000 children, compared to 54 deaths per 100,000 live births for SIDS . Presently, SUDC cannot be
predicted or prevented. Risk factors are not well understood. Most SUDC deaths occur between the ages
of 1 and 3 years, but researchers have looked at cases of children as old as 11.
PRESS
The New York Times
Letter to the Editor
LETTER
Sudden Infant Death
Published: February 4, 2011
To the Editor:
Y
our article about sleep safety for infants underscores one of the simplest yet often overlooked ways
in which parents can protect their newborns from needless death (“Keeping Baby Safe,” Business
Day, Feb. 1).
Sadly, it is just one of a number of safety tips many parents do not heed. Parents and all caregivers
should always lay baby to sleep face up in a safety-approved crib, on a firm mattress with a fitted sheet;
remove loose bedding and all soft objects from the crib; and avoid sharing any sleep surface with baby.
Adult beds, couches and chairs are never safe for infant sleep, are a risk factor for sudden infant death
syndrome and can cause accidental suffocation.
There is no shortage of love when it comes to welcoming a new child into the family. But with love
come safety and the responsibility to eliminate all risk factors associated with SIDS and other sudden
unexpected infant deaths.
Linda McNeil Tantawi
Executive Director
Hackensack, N.J., Feb. 2, 2011
PRESS
USA Today Letter to the Editor
PRESS
New Study a Breakthrough in
Preventing Sudden Infant Death
For Immediate Release
February 2, 2010
Contact: Linda McNeil Tantawi
(201) 996-5301 or (201) 983-7874
T
oday’s release of a major study linking Sudden Infant Death Syndrome (SIDS) with low production
of serotonin in the brainstem is a major breakthrough for families and physicians attempting to better
understand the dangers of SIDS. Moreover, that Dr. Kinney, et al’s work may lead to a concrete approach to
identifying babies at risk for SIDS, the leading cause of death for infants between 1 and 12 months old in the
United States is of profound importance. In addition, by showing a presence of a SIDS risk factor in 95%
of all cases in this study, this research underscores the need for parents and caregivers to be ever vigilant in
implementing all safe sleep/SIDS risk-reduction practices.
The study will be published in the February 3rd issue of The Journal of the American Medical Association
and was funded in part by a grant from the New Jersey-based CJ Foundation for SIDS. Since 1994, the CJ
Foundation has provided millions of dollars towards SIDS research projects, organizations, support programs
and public education and awareness campaigns throughout the nation, making tremendous strides in its fight
to eliminate SIDS.
Parents and caretakers of newborn infants can take simple steps that reduce the danger
of SIDS by:
• Always laying your baby to sleep face up. Side and tummy positions are not safe; check with your doctor if your
baby has breathing problems.
• Don’t smoke while pregnant and never smoke near your infant. While pregnant or considering pregnancy do not
smoke. Never let others smoke near your baby. Smoking is a major risk factor for SIDS.
• Don’t let your baby get too hot. Overheating is a leading risk factor for SIDS. Dress your baby in as much or as
little as you would wear. If your baby is sweating, has damp hair, or a heat rash, he or she may be too hot. Room
fans have been shown to reduce the risk of SIDS. Consider using a wearable blanket or other type of sleeper
instead of a blanket.
PRESS
(New Study continued)
• Lay your baby to sleep in an approved crib, on a firm mattress. Do not let the baby sleep on soft things, like
a couch, pillow, sheepskin, foam pad, or waterbed. Remove all loose bedding, stuffed animals, and pillows from
crib. Crib bumpers are not recommended and can be hazardous.
• Create a healthy lifestyle for you and your baby. When pregnant, see your doctor often and do not use drugs
or alcohol. Talk with your doctor about changes in your baby and how your baby acts.
• If possible, breast feed your baby. Breast feeding has been shown to reduce the risk of SIDS.
• Offer your baby a pacifier at all sleep times. Pacifiers have been shown to reduce the risk of SIDS.
• Put your baby on his or her tummy to play when your baby is awake and supervised. Make sure someone is
always watching. “Tummy Time” is good for your baby because it makes neck and shoulder muscles stronger.
• Don’t share sleep surfaces. Adult beds, couches, and chairs are not safe for infant sleep and increase the risk of
SIDS, suffocation and accidental infant death. After breastfeeding put your baby back in his or her crib.
• Share these tips with everyone who cares for your baby. For parents who suffered the loss of a baby, perhaps
this study, by finding strong evidence of an underlying biological cause for SIDS, will give them peace of
mind as well as hope that one day we will truly eliminate SIDS.
Education is the key to keeping your baby safe. For more information on SIDS and ways in which you can support our
mission, please visit us online at www.cjsids.org
GRANTS
CJ Grants Awarded in 2011
Angel Eyes (Denver, CO) – Salary Support of Social Worker
Children’s Research Institute, Children’s National Medical Center (Washington, DC) – Salary Support of
Educators, SIDS Outreach Project
Chi Mu Omega Chapter of Alpha Kappa Alpha Sorority (Mound Bayou, MS) – North Delta Back to Sleep
Initiative
Guild for Infant Survival, Orange County (Tustin, CA) – Salary Support of Director
Inova Health Care Services (Falls Church, VA) – Education Initiative for Low-Income Hispanic Women
Iowa SIDS Foundation (Ankeny, IA) – Educational Materials
Mississippi SIDS Alliance (Madison, MS) – Salary Support of Program Director
Philadelphia Department of Public Health, Fatality Review Program (Philadelphia, PA) - Salary Support of
Bereavement Care Provider
SIDS Mid-Atlantic (Haymarket, VA) – Bereavement Support Groups
SIDS Resources (St. Louis, MO) – Infant Loss Bereavement Program
Stark County Health Department (Canton, OH) – Safe Sleep Education
Sudden Infant Death Network of Ohio (Cuyahoga Falls, OH) – Newsletter Production
Sudden Infant Death Services (SIDS) of Illinois (Lisle, IL) – Education Initiative for Hispanic Mothers
Sudden Infant Death Support (SIDS) Network of Kansas (Wichita, KS) – SIDS and Infant Safe Sleep Training
University of Tennessee Medical Center, Regional Perinatal Program (Knoxville, TN) – Caring Communities
Education Initiative
Westchester Jewish Community Services (White Plains, NY) – SIDS and Infant Loss Program
Wood County Health Department (Wisconsin Rapids, WI) – Infant Safe Sleep Summit
RESEARCH GRANTS
Children’s Specialists Foundation
Institution/Agency: Principal Investigator:
Henry F. Krous, MD
Grant cycle:
April 2010 – March 2011
Amount of funding:
$202,000 ($67,000 from SUDC Program)
Project:
San Diego SIDS/SUDC Research Project
Description:
Children’s Specialists Foundation, Rady Children’s Hospital, San Diego
The San Diego SIDS/SUDC Research Project (SDSSRP) is dedicated to
increasing the understanding of sudden infant and childhood death. It endeavors to provide individual families with thorough second opinions
personal support, and to publish and present our work in peer reviewed
medical journals, scientific conferences, and professional and public
assemblies. The aims of SDSSRP include but are not limited to:
1) Determine and clarify features of the medical history, death scene and
postmortem examination to refine the proposed triple risk model,
2) Provide a basis for legislation for national use of standardized scene
investigations and autopsy protocols in cases of sudden infant and
childhood death, 3) Provide a basis for national legislation with regard
to the utilization of records and specimens from these cases for research
purposes, 4) Motivate other investigators to begin research into SIDS
and SUDC, and 5) Expand the knowledge base of postmortem findings
in SIDS and SUDC, including their underlying similarities and differences,
and how each correlates with clinical and epidemiological variables.
RESEARCH GRANTS
Children’s Hospital Foundation
Institution/Agency:
Children’s Hospital Foundation, Children’s National Medical Center Washington DC
Principal Investigator:
Rachel Y. Moon, MD & Fern R. Hauck, MD, MS
Grant cycle: April 2010 – March 2011
Amount of funding: $18,000
Project: Changes in Sleep Patterns and Stress in Infants Entering Child Care:
Implications for SIDS Risk
Description: Approximately 20% of infants who die of sudden infant death syndrome
(SIDS) die while in child care settings and many of these deaths occur
in the first week, particularly on the first day of child care. While no
single factor accounts for all SIDS cases, there are several possible factors
that contribute to increased risk during the transition to child care; these
include change/disruption in sleep pattern, increased stress in the infant,
and disruption in the normal maturation of the infant circadian rhythm.
This project pilots investigative techniques in infants, half of whom are
entering child care, by measuring sleep patterns and hormones that are
indicative of stress and circadian rhythm in infants.
Mayo Clinic
Institution/Agency:
Principal Investigator:
Mayo Clinic – Rochester, Minnesota
Grant cycle: One-time gift
Amount of funding: $10,000
Project: Molecular Autopsy for Cases of Sudden Unexplained Death in Childhood:
A Resource for Postmortem Genetic Testing
Description: The purpose of this research project is to elucidate a genetic cause for an
autopsy negative sudden unexplained death in a child. Postmortem genetictesting - that targets the genes encoding critical cardiac channels that
have been implicated as the cause of potentially lethal heritable arrhythmia syndromes like long QT syndrome (LQTS) and catecholaminergic
polymorphic ventricular tachycardia (CPVT) - is performed on genetic
material (DNA) extracted from archived tissue or blood spot cards.
Michael J. Ackerman, MD, PhD
Chairman
Joel Hollander
President
Susan Hollander
Treasurer
Brian Clark, Esq.
Clifton Budd & DeMaria
Pete Figliozzi, CPA
Noel Firth
Margaret Mary Fitzpatrick, S.C.
President
St. Thomas Aquinas College
Gary E. Greenspan
Executive Vice President
Member: Broker Advisory Board
Cushman & Wakefield, Inc.
David Jurist
President, Tanaseybert LLC
BOARD OF DIRECTORS & STAFF
Robert Kossar
Executive Vice President
Jones Lang LaSalle Americas, Inc.
Jennifer McConville
Kyra Oliver
Founder, Hayes Foundation,
President, Oliver Creative
Steve Rosner
Partner 16W Marketing
Kris Rovell, MSN, RN, C
Nurse Manager
Maternal Child Health
Riverview Medical Center
Steve Scully, Political Editor
C-SPAN
Jim Tenny
President/CEO
Della Femina Rothschild Jeary & Partners
Emeritus
Staff
Don Imus
Nationally Syndicated Radio Talk Show Host
Linda Tantawi, Executive Director
Mel Karmazin
CEO Sirius XM Radio
Laura Crandall, Associate Executive Director
of Advocacy, Program Director & Founder
SUDC Program
Wendy Jacobs, Associate Executive Director,
Programs & Grants
Kaelyn Siversky, Foundation Assistant

Press Kit - The CJ Foundation for SIDS

Transcription

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