Put Your Compassion in Action, America! National Epidermolysis Bullosa Awareness Week Campaign Eagerly Anticipated
Summary
Common occurrences in severe forms of EB include open wounds, disfiguring scars, musculoskeletal deformities causing restricted function, internal and external blistering, malnutrition, and deterioration of the eyes and teeth.What the public can do right now: · Visit the website and indicate by completing the online forms that you plan to participate individually or as a group in the October EB Relay and Rallies, request progress updates, and/or ask to help coordinate the campaign by distributing information to clubs, organizations, libraries, businesses, the media, those in the medical or educational field, etc; · Contact your government representatives and ask them to issue a public proclamation of National Epidermolysis Bullosa Awareness Week; and · Tell everyone you know about the website, and use viral marketing tools including blogs and social networking sites like MySpace and Facebook, to urge others to visit www.ebrelay.org.If you can conjure up an image of this child, then you’ve envisioned someone who needs your help, but more importantly, someone you can help.EB is a group of genetic disorders characterized by exceptionally fragile skin and chronic, painful wounds and blisters caused by the slightest trauma, even normal day-to-day activities.Common occurrences in severe forms of EB include open wounds, disfiguring scars, musculoskeletal deformities causing restricted function, internal and external blistering, malnutrition, and deterioration of the eyes and teeth.Approved activities will be posted on the website.What the public can do right now:· Visit the website and indicate by completing the online forms that you plan to participate individually or as a group in the October EB Relay and Rallies, request progress updates, and/or ask to help coordinate the campaign by distributing information to clubs, organizations, libraries, businesses, the media, those in the medical or educational field, etc;· Contact your government representatives and ask them to issue a public proclamation of National Epidermolysis Bullosa Awareness Week; and· Tell everyone you know about the website, and use viral marketing tools including blogs and social networking sites like MySpace and Facebook, to urge others to visit www.ebrelay.org.###Media Contact:Gena Brumitt Gruschovnik, “Walk a Mile in My Shoes” EB Relay-RallyFor National Epidermolysis Bullosa Awareness Week 2007Phone: 519-641-0500Email: gena@ebrelay.orgWebsite: www.ebrelay.org Contact Information "Walk a Mile in My Shoes" EB Relay-Rally Gena Brumitt Gruschovnik 519-641-0500 www.ebrelay.org Attached Files Bill S.RES.180 The final legislation in the Senate, passed in September 2006 Filename: SRES180Final.pdf Bill H.RES.335 The final legislation in Congress, passed December 8, 2006, the last day of the 109th Congress Filename: HRES335Final.pdf Click here to view the list of recent Press Releases from Walk a Mile in My Shoes Promote Your Business Press Release Pricing Email this page to a friend