Gaucher Community News - National Gaucher Foundation

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NGF 2009 Updates Developing relationships: To improve communication between the NGF, patients, the medical community and the pharmaceutical industry, the NGF has been developing relationships and collaborating with all of the pharmaceutical companies who have treatments, treatment protocols and trials for Gaucher disease. This has resulted in a better understanding of each other’s business and how we relate to one another in this rapidly changing environment. Events: Although many planned events were put on hold this year, in 2010, the NGF plans to resume it’s efforts to raise awareness of Gaucher disease Gaucher Types 2 and 3: This year, the NGF took on the challenge of assisting families with Gaucher Types 2 and 3 and has been working with parents, the medical community and other organizations to help promote research, education and awareness. However, in order to address the issues surrounding the drug shortage, the NGF has had to put its collaboration with these groups on hold. In 2010 we will resume these efforts. Legislative Issues: The NGF continues to work with the health care industry and legislative body on issues that will benefit those with Gaucher disease and other rare diseases, as well. Our current projects are H.R. 5748/Ryan Dant Heathcare Opportunity Act of 2008 and the Health Insurance Coverage Protection Act. Although each piece of legislation now has hundreds of amendments tacked to it, we hope these bills will be passed. Patient Meetings: The NGF has had many faceto-face patient meetings throughout the U.S., in addition to WebEx meetings. Website: www.gaucherdisease.org went through many changes this year in order to accommodate the needs of the Gaucher community. As a result of the Cerezyme drug shortage and the new treatment protocols, individualized Web pages were built for each pharmaceutical company to accommodate their individual information related to treatment, treatment locations, correspondence, Town Hall meetings, etc. The NGF utilizes these separate web pages to separately house the massive amounts of information to be posted for each pharmaceutical. Further it enables the NGF to post information that these companies may not be able to post. All of this information can be found under “Treatments/ Pharmas.” MARK YOUR CALENDAR Gaucher Conference November 7 and 8, 2010 Atlanta, GA Check the NGF website at www.gaucherdisease.org for details. 12 The National Gaucher Foundation will post details at the website and on the genetic disease list serve as they become available.
NGF STATEMENT OF PUBLIC SUPPORT REVENUES AND EXPENSES FOR THE YEAR ENDED MAY 31, 2009 SUPPORT AND REVENUE: Support $2,793,596 Revenue $ 70,720 TOTAL SUPPORT AND REVENUE $2,864,316 EXPENSES: Program Services $2,548,287 General and Administrative $ 144,521 Fund-raising $ 119,542 TOTAL EXPENSES $2,812,350 EXCESS/DEFICIT OF SUPPORT AND REVENUE OVER EXPENSES $ 51,966 FUND BALANCES— BEGINNING OF YEAR $ 372,762 FUND BALANCES— END OF YEAR $ 424,728 13
Page 1 and 2: Gaucher Community News Fall/Winter
Page 3 and 4: Emily’s New Adventure Emily’s N
Page 5 and 6: Dear Gaucher community, Shire HGT I
Page 7 and 8: Neuronopathic Gaucher Disease Gauch
Page 9 and 10: To our children who are still fight
Page 11: The intense part of her marathon tr
Page 15 and 16: IN HONOR OF • Luvenia Corbin for
Page 17 and 18: IN HONOR OF • Izzy McFalls Walk f
Page 19 and 20: IN HONOR OF • Mr. and Mrs. Larry
Page 21 and 22: IN MEMORY OF • Herbert Kaufman fr
Page 23 and 24: More Patients on Zavesca® (miglust
Page 25 and 26: 4) Q: I’ve been reading your arti
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Gaucher Community News - National Gaucher Foundation

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