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New SDS Booklet now available

Shwachman-Diamond America is pleased to announce that we have a new booklet available.
The title is Management of the Hematologic Abnormalities of Shwachman-Diamond Syndrome
by Richard Harris, M.D.
This booklet is excellent for parents, pediatricians and specialists.
If you would like a copy (or copies) of the booklet sent to you, please send your mailing address to shwachmandiamondamerica@embarqmail.com These booklets are FREE to anyone who requests them.
The booklet includes sections on the following topics:
Description
History
Diagnosis
Management of Neutropenia
Management of Fevers in SDS patients
Antibiotic coverage prior to Dental Work or Surgical Procedures
Management of other Cytopenias
Management of Anemia during Surgical Procedures
Management of MDS
Management of Leukemia
Bone Marrow Transplantation for SDS
And also includes the following:
K-M Survival Plots
Important Contacts
References
Glossary
All of us at Shwachman-Diamond America would like to take this opportunity to thank Dr. Harris for all of his hard work and dedication to this project.
Thank you, Dr. Harris, from the bottom of our hearts!
Your dedication to all of our SDS and SDS-like children is appreciated more than you will ever know.
President Bush Signs Landmark Genetic Nondiscrimination Information Act Into Law
Washington, D.C. – May 21, 2008 – The Coalition for Genetic Fairness ( geneticfairness.org ) commends President George W. Bush for signing into law today the first civil rights legislation of the new millennium, the Genetic Information Nondiscrimination Act (GINA). GINA is the first and only federal legislation that will provide protections against discrimination based on an individual's genetic information in health insurance coverage and employment settings.

"This is a tremendous victory for every American not born with perfect genes – which means it's a victory for every single one us," said Representative Louise Slaughter (D-NY). "Since all of us are predisposed to at least a few genetic-based disorders, we are all potential victims of genetic discrimination."

"Today marks the beginning of a new era in health care," continued Slaughter. "Americans can finally take advantage of the tremendous potential of genetic research without the fear that their own genetic information will be used against them."
Past Events

2005 A family day at Werribee Zoo - Melbourne, March

Royal Children's Hospital, Melbourne
Information evening, Special Guest Speaker
Dr Peter Durie, MD - Hospital for Sick Children
Toronto, Canada

Family Day - Melbourne Aquarium, September

Information on the 4th International Congress
on Shwachman-Diamond Syndrome

Boston, Massachusetts June, 2007 is at www.sdscongress07.com
Future Events

We would welcome your suggestions for more future events.