This note is a special request from our subscriber, Sharon Terry. Although Lactnet does not allow advetisements for things that are income generating for subscribers, this is a plea for help that I am happy to put up. Thanks, Sharon, for asking first before sending this. Please help by writing to your representatives about this issue. Anyone with children facing special challenges needs our help and support. Kathleen B. ****************************** National Association of Pseudoxanthoma Elasticum Northeast Chapter 23 Mountain Street Sharon MA 02067 E-mail: [log in to unmask] 617-784-8006 20 August 1995 Dear Friend, Our children, Elizabeth (7.5) and Ian (6), were diagnosed with pseudoxanthoma elasticum (PXE) 8 months ago. This disease often causes legal blindness, and other serious complications. We are doing all we can to prevent this for them. But now we find that we need your help. We desperately need you to write letters to your representatives and senators in Congress. Several doctors are seeking funding in the next month for pseudoxanthoma elasticum (PXE) research from the National Institutes of Health. Typically, from 8% to 18% of these grants are funded. We need these PXE grants funded! There are breakthroughs on the horizon! There are two steps we'd like you to take: 1) Following this note is a sample letter to a congressperson. Please hand write it if possible. Make it personal if you wish: describe our involvement with PXE. If you cannot write; please type, call, fax or e-mail your thoughts. Honorable (Member Name) House of Representatives Washington, D.C. 20515 Senator (Name) US Senate Washington, D.C. 20510 2) Copy this letter and give it out to your networks: relatives, friends, temple and church groups, school groups, work groups, clubs, doctors... The more letters that reach Congress the better our chances of influencing the NIH!!! If you have any questions feel free to call us (617-784-8006) or e-mail [log in to unmask] Thank you! Patrick and Sharon Terry Co-chairpersons for the Northeast Chapter of National Association of Pseudoxanthoma Elasticum (PXE) *********************************************************** SAMPLE LETTER: Dear (Senator or Representative): Please ask the NIH to fund grant proposals for pseudoxanthoma elasticum (PXE). It is a connective tissue disorders involving the skin, the eyes and the cardiovascular system. Some of its manifestations mimic premature aging, thus research may benefit the general population. People with this disorder often experience central vision loss, cardiac and gastrointestinal difficulties. [Personalize here if possible, feel free to mention Elizabeth and Ian!!] There are several doctors on the threshold of meaningful breakthroughs. They need the NIH to fund their research. Please contact the NIH for us and support research for PXE. [log in to unmask] ------------------------------------------------------------------------------- Kathleen B. Bruce RN, BSN, IBCLC, LLL Leader Co-Owner Lactnet, E-Mail = [log in to unmask] LACTNET WWW site: http://www.mcs.com/~auerbach/lactation.html