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StepUp-SpeakOut.Org Newsletter
Together, we can make the difference in Lymphedema
Special Newsletter Edition
Regarding ALFP
Therapist Survey
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SPECIAL NEWSLETTER EDITION
We are sending you this special newsletter edition to let you know about an important survey of lymphedema therapists being taken by the American Lymphedema Framework Project. The purpose of their survey is to better understand the range of current practices of lymphedema management in the United States. We at StepUp-SpeakOut strongly support their mission to define best lymphedema treatment practices for professionals and patients alike. As patients, we can make a difference by forwarding this message to our therapists and urging them to take part.
Our Research Director, Dr. Mei Fu, has developed this Lymphedema Therapist Survey along with Dr. Electra Paskett and others of the American Lymphedema Framework Project. We urge all lymphadema therapists to take part in this survey so we can better understand the range of current practices of lymphedema management in the United States. The deadline to submit the completed survey is November 20, 2009.
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ALFP Mission: Improve the management of lymphedema and related disorders in the United States while contributing to global international advancement.
This mission will be achieved by defining best practices of lymphedema management and developing a minimum data set to improve lymphedema outcomes. The ALFP will establish a leadership role in lymphedema risk reduction, treatment, education, health policy, and research. These outcomes will be achieved through a partnership among all lymphedema stakeholders, including patients, healthcare professionals, researchers, industry representatives, and third-party payers.
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Lymphedema Therapist Survey
This survey was developed under the leadership of the ALFP research committee chaired by Dr. Electra Paskett and co-chaired by Dr. Mei Fu with input by expert clinicians on the ALFP steering committee. The answers you provide on the survey will be used for research purposes only and are strictly anonymous. Your answers will be evaluated for statistical purposes only. Your input will assist the ALFP in understanding current practices of lymphedema care in the United States today, and will move forward the ALFP goals of evaluating appropriate health care services and improving quality of care for patients with lymphedema. As a practicing lymphedema therapist, your participation is valuable in this worthwhile endeavor.
Survey results will assist the ALFP in understanding current practices of lymphedema care in the United States today, and will move forward the ALFP goals of evaluating appropriate health care services and improving quality of care for patients with lymphedema. We invite all practicing lymphedema therapists in the U.S. to take this survey, and we invite you to share this message with any practicing lymphedema therapists you may know.
To access the survey, please go to www.ALFP.org and click on the "Therapist Survey" tab. This website will provide directions for completing the survey online. We sincerely thank you for your participation!
This survey will close on Friday, November 20th, 2009.
Thank you!
Melanie Schneider
Project Development Specialist
American Lymphedema Framework Project
University of Missouri
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OUR MISSION
As women and men with post-breast cancer lymphedema we have struggled to uncover the information we've needed about this condition, to find good treatment for it, and to keep it in control. With the help of our fellow lymphedema sisters and brothers we have even learned to live comfortably with it. Out of those experiences and a desire to share our discoveries with others, we have created this site in order to STEP UP and SPEAK OUT:
To provide accurate and accessible information about lymphedema, its prevention and treatment, to all women and men who have been treated for breast cancer.
To raise awareness of lymphedema risk and promote risk reduction practices
among all breast cancer veterans.
To support those with breast cancer as they pursue prevention and treatment
options for lymphedema, and to help them find the resources they need for managing both the risk and the treatment of this condition.
To represent the concerns and interests of women and men with lymphedema
and advocate with them in the medical and research communities, the political arena, and among the general public.
To promote research into the prevention, treatment and cure of lymphedema.
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