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Constituents' Corner |
We invite you to use this space that we reserve for you to share your successes and opinions. You may submit your ideas and articles for future issues of the FYI from the NHLBI to NHLBI.Listens@nih.gov.
From Progeria Research Foundation
The fourth workshop sponsored by the Progeria Research Foundation (PRF) will
be held in Boston, Massachusetts, on November 3-5, 2005. The PRF was founded
in 1999 to discover the cause, treatment, and cure for Hutchinson-Gilford Progeria
Syndrome ("the premature aging syndrome") and its aging-related disorders.
The 2005 Workshop will consider research, based on the 2003 discovery of a key
gene mutation, that has sought to define cellular and biochemical defects in
Progeria cells and in mouse models for the disease. Presentations and posters
will include reports on the reversal of the Progeria phenotype, the results
of which, taken together with clinical natural history studies to be reported,
are providing key information for planning clinical trials. Speakers will include
Dr. Nabel and Dr. Francis Collins, Director, National Human Genome Research
Institute. All interested scientists and physicians are welcome. For more information
about the Workshop, contact Audrey Gordon, Executive Director, at agordon@progeriaresearch.org.
From Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation is hosting An Evening of Recognition to celebrate five years of progress in the fight against pulmonary fibrosis on September 17, 2005, in Chicago, Illinois. The event is designed to raise awareness and funds to find a cure for the disease. For more information, contact the Foundation at 312-587-9272 or visit
Pulmonary Fibrosis Foundation.
Additionally, the Foundation announces November as Pulmonary Fibrosis Month and November 22 as Pulmonary Fibrosis Day for the State of Illinois and is hoping to have the remaining 49 states adopt similar resolutions.
Submitted by Vakarie Roberts, Pulmonary Fibrosis Foundation
From Scleroderma Foundation
The Scleroderma Foundation has dedicated a section of its Web site to helping physicians, nurses, and other health professionals locate resources for scleroderma and related conditions. It includes links to a comprehensive collection of articles and abstracts and a listing of continuing medical education activities to help health professionals stay abreast of current treatment strategies and research.
For more information visit Scleroderma Foundation or call 800-722-4673.
From Narcolepsy Network, Inc.
The Narcolepsy Network, Inc., is celebrating its 20th anniversary during its 2005 Annual Conference on November 11-13, 2005 in Boston, Massachusetts. Patients and their families will learn new approaches to living with narcolepsy and cataplexy, the latest information on drug therapies, and energy-enhancing techniques. For more information visit
Narcolepsy Network, Inc. or call 888-292-6522.
From Lymphatic Research Foundation
The Lymphatic Research Foundation is delighted to note the publication of an article “Unlocking the Drains” in the July 2005 issue of Nature (Vol. 436, 28, pp. 456-58) that highlights the importance of the lymphatic system. It is rewarding to see efforts to raise awareness of the need for lymphatic research paying off. Visit the
Lymphatic Research Foundation for more information.