Platelet E-News – September 9, 2002

Contents:

  • Back to school health tips
  • Advocacy Update
  • Gene linked to ITP

 

BACK TO SCHOOL HEALTH TIPS

We've heard from several parents noting a disproportionate number of children with ITP in their schools. Some patients report their platelets dip when they are exposed to pesticides or other chemicals. Back to school or not, here are some helpful tips.

--Get the Environmental Protection Agency's new brochure "Protecting Children in Schools from Pests and Pesticides" to use in encouraging school officials to adopt the least toxic pest management. (Call 800-490-9198, document number EPA-735-F-02-014) or see www.epa.gov/pesticides/ipm.

--Avoid polyvinyl chloride (PVC) or vinyl clothing, shoes, and school supplies. PVC is a known carcinogen, can damage organs, and suppress the immune system. Soft vinyl contains phthalates which, in addition to effecting sexual development, are considered a probable carcinogen. Test by Greenpeace found toxic heavy metals, lead and cadmium in vinyl backpacks and raincoats. See www.childenvironment.org

ADVOCACY UPDATE

Autoimmune research

The advocacy group of the American Autoimmune Related Diseases Association (AARDA), of which PDSA is a member, has been working to get congressional funding to implement the Autoimmune Diseases Research Plan of the National Institutes of Health (NIH). The goal is to get full funding (about $450 million) in FY 2004 with initial funding in FY2003, if possible. The plan is in review by the Secretary of Health and Human Services. T. Harkin (D-IA), B. Boxer (D-CA), E. Kennedy (D-MA) and C. Morella (R-8-MD) have proposed funding the Research Plan in various bills. The Autoimmune Diseases Research Plan was requested in Title XIX of the Children's Health Act of 2000 (P.L. 106-310). See www.aarda.org for more information.

Rare Diseases research and development

H.R. 4014 (the Rare Diseases Orphan
Product Development Act) sponsored by M. Foley (R-FL), was successfully voted out of committee by unanimous consent. H.R. 4013 (the Rare Diseases Act) sponsored by J. Shimkus (R-IL) is already on the calendar for a vote in the House of Representatives. It is our hope that both H.R. 4013 and 4014 will be brought to the full House for a vote within the next two weeks. This update from NORD. See www.rarediseases.org for more information.

Please contact your legislative representatives encouraging their support of these important initiatives.

GENE LINKED TO ITP

"…the development of platelet-reactive antibodies associated with ITP is driven by an encounter with diverse platelet antigens through the clonal expansion of B-cells…The extraordinarily high usage of the VH3-30 heavy-chain gene in these patients has implications for the pathogenesis, diagnosis, and management of chronic ITP. " report researchers at the University of Pennsylvania and the Weill Medical Center of Cornell University in the August 15 issue of Blood (Blood. 2002;100:1388-1398) See www.bloodjournal.org for more information.

Join PDSA on-line at www.pdsa.org/joinus.htm, send a check to PDSA, P.O. Box 61533, Potomac, MD 20859, fax your donation to 301-294-3125, or call us toll-free at 1-87-PLATELET. Just list the additional copies you select in the notes section of your on-line order or on your mailed order form.


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This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org

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