Im taking a flight out today. Dr. Joel Moss at The National Institutes of Health ask me to come to Washington D.C. this week as it is big week for LAM. Our voice be heard on on Capital Hill! Follow The LAM Foundations lead and call or email your representative! It works, that how we got The National Institutes of Health to invest $21 million for LAM research! Heres an email from The LAM Foundation and a sample letter : The LAM Foundation, in partnership with the American Thoracic Society, is holding a LAM Awareness Briefing for Congressional Staff. The briefing takes place this Wednesday, January 28, 2015, in Washington, DC. Our very own, Kat Steele will speak on behalf of all women with LAM. Drs. Elizabeth Henske and MeiLan Han will also present, see details below.Here is how your voice can be heard - Please take 5 minutes to advocate for LAM research! Call or email your US Representative’s office (house.gov/representatives/) Using the sample text provided below, ask your Representative or a member of their staff, (the Health Legislative Assistant), to attend our briefing. Let our LAM Foundation Board Member and Advocacy Chair in DC, Christina Hamilton (christinahamilton@gephardtdc), know that you contacted your Represenitive so she can follow up as well. You can reach Christina at (703) 785-8416 if you have questions. Ask your friends and family to contact their Representatives as well. If you need the phone number for your Representative or you do not know who your Representative is, you can look it up at this website (house.gov/representatives/). All Representatives are listed by State; there is a section in the top right corner to look up who represents you using your zip code. Thank you, The LAM Foundation Staff SAMPLE LETTER/SCRIPT: Dear Mr. /Ms. (insert Representative last name here), I am contacting you as a patient (or friend, family member of a patient) with a rare lung disease called LAM or lymphangioleiomyomatosis (lim-FAN-je-o-LI-o-my-o-ma-TO-sis). This Wednesday, January 28, the American Thoracic Society (ATS), in partnership with The LAM Foundation and the COPD Foundation, is holding a briefing from 12-1:30 pm in B-340 of the Rayburn House Office Building to share information about the impact of these diseases on women and the work being led by NIH and others. I would appreciate it if you or someone on your staff would attend. LAM is a rare lung disease that usually affects women in their child bearing years. Currently, there is no cure but the science is promising and a therapy has recently been discovered in part because of the efforts made possible through the National Institutes of Health (NIH) and The LAM Foundation. Thank you so much for considering attending on Wednesday. If anyone is able to attend, please RSVP to Chris Hughes of the American Thoracic Society at [email protected] or at (202) 296.9770. If you would like any additional information on LAM, please do not hesitate to contact me or The LAM Foundation (thelamfoundation.org or 513.777.6889). Sincerely, Your name Address U.S. Congressional Briefing Women’s Lung Health: Advances & Challenges Sponsored by The American Thoracic Society In cooperation with Representative Rosa DeLauro (CT) Ranking Member, Appropriations Subcommittee on Labor, Health & Human Services and Education Representatives David P. Joyce (OH) and John Lewis (GA) Co-Chairs, Congressional COPD Caucus January 28, 2015, 12:00 pm – 1:30 pm B-340 Rayburn House Office Building - Box Lunch Available – Lymphangioleiomyomatosis (LAM) is a progressive lung disease that usually affects women in child-bearing years. Twenty years ago, there were no treatments for LAM and no hope for patients. In the mid-1990’s, scientific research led to major breakthroughs, from identification of the LAM gene to an effective therapy. Today we know that more women than men die of COPD in the U.S., particularly women who have never smoked. With COPD now the third leading cause of death in the U.S., there is an urgent need to develop better diagnosis, treatment and prevention tools. Join us to learn how research at the National Heart, Lung, and Blood Institute at NIH has transformed the lives of women with LAM and other diseases and how current efforts are paving the way for better treatment and prevention of COPD among women. With presentations by: Gary Gibbons, M.D., Director, National Heart, Lung, and Blood Institute NHLBI Advances in Women’s Lung Health Research Kathryn (Kat) Steele LAM Patient Perspective Elizabeth Petri Henske, M.D. Professor of Medicine, Brigham & Women’s Hospital & Harvard Medical School, Director, Center for LAM Research & Clinical Care LAM: How Research is Transforming Patient Lives MeiLan K. Han, M.D. M.S. Associate Professor of Medicine, University of Michigan The Burden of COPD Among Women *** Please RSVP to Chris Hughes of the American Thoracic Society at [email protected] or at (202) 296.9770 Cosponsored by: The LAM Foundation & COPD Foundation
Posted on: Tue, 27 Jan 2015 17:58:15 +0000
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