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

Many thanks to all who suggested topics for this issue of the FYI from the NHLBI. Because of your generous contributions, this issue contains two extra pages. If you have ideas for our autumn issue, please send them to NHLBI.Listens@nih.gov.

C.A.R.E. Foundation Scientific Advisory Board Member Leads Study on ARVD

The C.A.R.E. Foundation

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.
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Preeclampsia Foundation Gathers Global Health Leaders and Medical Experts to Address Leading Cause of Maternal Mortality

The Preeclampsia Foundation

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.
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Research Support Comes Full Circle for Investigator

The Alpha-1 Foundation

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.
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NECA Develops Collaborations to Empower People Living with Lung Disease

NECA

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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