FYI from the NHLBI Index

May 2006: Vol. 7, Issue 1
Constituents' Corner

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State Tax Check-off to Help Fight Sarcoidosis

From National Sarcoidosis Society

This year, residents of Illinois will have the opportunity to make donations through their 2006 state tax returns to fund research on sarcoidosis, a little-understood disease that disproportionately affects African Americans and, to a lesser degree, people of Scandinavian descent. Ms. Glenda Fulton, head of the National Sarcoidosis Society Local Chapter in Chicago, along with State Representative Connie Howard and State Senator Mattie Hunter, were able to get legislation passed and signed by Governor Rod Blagojevich that allows Illinois taxpayers to donate to the sarcoidosis cause via their 2006 Illinois 1040 state tax returns. If the check-off generates at least $100,000 in donations this year, it becomes eligible to appear again on next year?s tax form. ?It is imperative that we spread the word about this tax deduction and significant source of revenue to assist in finding a cure, or at the very least, the cause of a disease that has been affecting people for over 130 years,? said Ms. Fulton. For more information on sarcoidosis or the tax check-off, contact Ms. Fulton at 773-536-7754 or sarcoidosis2@hotmail.com.

Submitted by Glenda Fulton, National Sarcoidosis Society

Modified 6/20/06
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Barth Syndrome Conference

From Barth Syndrome Foundation

The Barth Syndrome Foundation is presenting the 3rd International Barth Syndrome Foundation Scientific and Medical Conference on July 6?7, 2006, at the Coronado Springs Resort in Buena Vista, Florida. Researchers and clinicians from diverse fields will offer presentations in an innovative, thought-provoking agenda that will address what is now known and what is not yet understood. Major agenda topics include Functions of the Tafazzin Protein, Cardiac Aspects of Barth Syndrome, Hematological Aspects of Barth Syndrome, and other Clinical and Scientific Issues of Barth Syndrome. More information about the meeting can be found at www.barthsyndrome.org.

Immediately following the conference, on July 8, physician attendees will participate in working sessions to develop the first Barth syndrome treatment guidelines. It is expected that the newly developed guidelines will become a necessary reference tool for every physician who treats a Barth syndrome patient.

Submitted by Shelley Bowen, Barth Syndrome Foundation, Inc.

Modified 6/20/06
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