FYI from the NHLBI Index
May 2003: Vol. 4, Issue 1 Constituents' Corner
C.A.R.E. Foundation Scientific Advisory Board Member Leads Study on ARVD
Preeclampsia Foundation Gathers Global Health Leaders and Medical
Experts to Address Leading Cause of Maternal Mortality
Research Support Comes Full Circle for Investigator
NECA Develops Collaborations to Empower People Living with Lung Disease
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C.A.R.E. Foundation Scientific Advisory Board Member Leads Study on ARVD
Individuals suspected of having arrhythmogenic right ventricular cardiomyopathy/dysplasia (ARVD) can now volunteer
to be screened through an NHLBI-supported study at 12 medical centers geographically distributed throughout the
United States and Canada. Scientific Board members from the Cardiac Arrhythmias Research and Education (C.A.R.E.)
Foundation, a nonprofit organization that promotes education, awareness,
and advocacy for people who have inherited life-threatening arrhythmias, will be spearheading the project.
Patients will undergo a series of noninvasive tests. If results are consistent with a diagnosis of ARVD, they
will undergo invasive testing (angiography). Those diagnosed as having ARVD will be asked to have
first-degree relatives undergo noninvasive screening and submit blood for a genetic study.
This integrative research project will expand clinical knowledge of ARVD and localize genes responsible for
this disorder. The C.A.R.E. Foundation is assisting the researchers with patient recruitment by enhancing
awareness of the study among the public and medical communities. C.A.R.E. receives inquiries from families
across the United States who have been diagnosed with a life-threatening heart rhythm disorder or who have
experienced sudden cardiac arrest or sudden death.
Article contributed by:
Ms. Kathy McInerney, Director of Development, C.A.R.E. Foundation.
Preeclampsia Foundation Gathers Global Health Leaders and Medical Experts to Address Leading Cause of Maternal Mortality
The Preeclampsia Foundation hosted the first International Preeclampsia Summit on April 4-6 in Seattle,
Washington. Health professionals and researchers from Canada, India, Jamaica, Mexico, Nigeria, South Africa,
the United Kingdom, and the United States joined representatives from the World Health Organization,
Save the Children, PATH (Program for Applied Technology in Health), the NIH, Family Care International,
the Columbia University School of Public Health's Initiative on Averting Maternal Death and Disability, and
the Bill and Melinda Gates Foundation to identify and prioritize
interventions to reduce maternal and infant illness due to preeclampsia and eclampsia.
The opening session, titled "A Patient's Perspective," featured several preeclampsia survivors and helped ground
participants in the real-life stories, rather than just the statistics, of the disease. Later sessions covered the
diagnosis and treatment of preeclampsia, the global impact of the disease, and the realities of maternal health care
in the developing world. Work groups formed to brainstorm and prioritize interventions. At the close of the meeting,
the executive committee drafted an international call to action, citing specific interventions and priority areas
supported by the participants.
The Summit was made possible by a grant from the Bill and Melinda Gates Foundation.
The Action on Pre-Eclampsia (from the United Kingdom) and the HELLP Syndrome Society also provided financial support.
Preeclampsia occurs in approximately 5 percent of pregnancies and affects both mother and unborn baby.
It is characterized by high blood pressure, swelling, and protein in the urine and, if untreated, can lead
to stroke, kidney and liver failure, and hemorrhage.
Article contributed by:
Eleni Tsigas, Director of Communications, Preeclampsia Foundation.
Research Support Comes Full Circle for Investigator
Dr. Mark L. Brantly was a researcher in the NHLBI intramural program studying molecular biology when a
patient changed the course of his career. This patient urged Dr. Brantly to develop much-needed therapies
to help him and others with the same disease. The patient suffered from alpha-1 antitrypsin deficiency,
a hereditary disorder that can result in life-threatening liver and lung disease.
After building an impressive career in alpha-1 research, Dr. Brantly became involved with the Alpha-1
Foundation, a nonprofit organization dedicated to improving the quality of life for those diagnosed with
alpha-1 disease. In 1998, the Foundation recruited him to direct its new Alpha-1 Antitrypsin Genetics
Laboratory at the University of Florida College of Medicine. The Laboratory was the first academic research program
of its kind and was created by a unique
partnership between the Foundation, the University, and the State of Florida.
Prior to recruiting Dr. Brantly, the Foundation had approached the University of Florida College of
Medicine to convince them to develop a research program on alpha-1. Due to widespread support for such a
program among university leadership, the governor's office, and university alumni, the Foundation raised
$600,000 for the new laboratory. The University and the State of Florida also
made long-term financial commitments to the program totaling $1.3 million and $420,000 respectively.
These and other investments allowed Dr. Brantly to build upon the research he conducted at the NIH and create a
lab that currently is training 16 researchers interested in studying alpha-1 disease. He is now the recipient of an
NHLBI grant that will increase the research and training capabilities at the Alpha-1 Laboratory.
Article contributed by:
Ms. Silvana Rodriguez, Communications Specialist, Alpha-1 Foundation.
NECA Develops Collaborations to Empower People Living with Lung Disease
Inspired by the 2002 and 2003 PIO meetings, leaders of the
National Emphysema/COPD Association (NECA)
conducted a series of "Community-Building" meetings, several of which were hosted by
the American Lung Association of Metropolitan Chicago (ALAMC). In addition to PIO representatives and individual
patients, the meetings have attracted health care providers, educators, researchers, public officials, and others
interested in empowering people who have emphysema, chronic obstructive pulmonary disease (COPD), or other lung diseases.
Meeting outcomes include the
development of a support group network via the ALAMC and the establishment of NECA Networks to organize
collaborative lung health events throughout the United States. Generic and location-specific Lung Support
Group Tool Kits are being prepared for distribution at the events. Sessions focusing on support group needs resulted
in a project to produce print and electronic
publications to help group leaders exchange ideas and update one another about activities.
NECA hopes to work with other PIOs to raise awareness about disease consequences of tobacco use;
implement health education, disease prevention, and patient support programs for people who are living in
residential facilities or are incarcerated; develop methods to address end-of-life issues; and review materials
for the Tool Kits and a Lung Support Group Directory and Resource Guide. Lung diseases and sleep apnea support
groups, tobacco-cessation groups, groups to help surviving family members deal with grief and loss, and other
interested organizations are urged to contact Ms. Barbara Rogers, NECA president,
or Dr. Hedrick for more information
and to learn how to participate.
Article contributed by:
Dr. Hannah Hedrick, Vice-President, NECA.
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