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]
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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
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