The Alberta Lymphedema Association (ALA) is a charitable organization founded in 2003 by a team of people who recognized the need to help people living with, or at risk of, lymphedema. A learning association committed to ongoing education of its stakeholders, ALA works to make a difference and empower affected individuals and their families to help manage this condition. ALA works from the patient standpoint.
Brief History
2006
Produced and submitted petition so that lymphedema patients would get the needed treatment paid for by Alberta Health Service (AHS) which was tabled in the legislature.
Later in 2006, all Alberta breast cancer lymphedema patients received treatment paid for by AHS.
2007-2009
Conducted letter writing campaign and advocacy meetings
2009
Met face to face with the Health Minister
2010
Held our first lymphedema symposium with 400 people attending
Met with the deputy health minister, requesting funded treatment for all lymphedema patients. As a result, AHS established a lymphedema working group which included ALA.
2011
Held the first meeting of the AHS Lymphedema Working Group
2013
Facilitated our 2nd symposium, at which we announced that a clinic to treat primary and non cancer lymphedema patients would open in Calgary. ALA definitely had an impact on this pivotal decision!
Were asked to be on an Advisory Clinic Committee to assist with logistics. From all the information that the AHS Lymphedema Working Group gathered, we were able to move forward quickly.
2013-2014
With the opening of the clinic AHS has set up a Patient Advisory Group, ALA Board President Diane Martin was honored to co-chair with Lisa Warner (AHS Director Calgary Zone). Kate Nedjelski (member and Mother of primary lymphedema child) is also part of the advisory group.
2015
Co-hosted a National Lymphedema Conference which was a great success with high level representatives from Alberta Health Services.
Held an Alberta Stakeholders Meeting: Bringing those who are involved in the care of lymphedema within the province of Alberta together to discuss strategic planning and a path forward regarding lymphedema care, education and treatment Alberta. The discussion theme was How to improve communication and access to health care in the context of lymphedema in Alberta and how to streamline the responsibility between the public and private health care system .
On December 16, 2015 ALA had a meeting with Health Minister Sarah Hoffman in regards to further funding, more clinics, backlog at the clinics for primary patients and help finding a doctor for patients.
2016
Began working with a representative of Health Minister Sarah Hoffman.
Contacted all lymphedema clinics and certified lymphedema therapists to capture the number of lymphedema patients there are in Alberta. This information was passed onto the Health Ministers representative.
2017
Continued to advocate for lymphedema patients through attendance at events
Maintained presence on the advisory group for the AHS lymphedema clinic
Sent letter to Canada’s Health Minister to ask for help in getting all the other provinces health services to provide treatment for lymphedema patients
Helped other provinces with information to help them work with their provincial health services
2018
Communicated with Internal Medicine in regards to establishing a diagnostic protocol for Lymphedema patients and continued our work to advocate for all lymphedema patients
2019
Organized and facilitated our first Lymphedema Education Night with keynote speaker, Catharine Bowman
Placed ad in the Canadian Family Physician Magazine
Presented at the All Party Caucus Meeting in Edmonton
Spoke with Deputy Health Minister
2020
Organized and facilitated two more Lymphedema Education Nights with keynote speakers Dr. Kennedy, Lori Radke and Elizabeth Girling
Met with Dr. J. Schaefer in regards to diagnostic protocols
2021
Hosted the first 100% virtual Lymphedema Education Night, featuring Dr. John Conly speaking on COVID-19 vaccines with a focus on lymphedema
Distributed other online education opportunities to our members on topics such as Cellulitis and Laughter Yoga
Worked with Dr. Schafer to open a new Calgary clinic for assessment and diagnosis of lymphedema
Worked with Dr. Kennedy to get lymphedema protocols for surgical procedures
Worked with AHS for protocols for lymphedema diagnosis and getting physicians to diagnose lymphedema
Created and distributed surveys to members, patients, and therapists to help inform our strategic plan and better serve our community
Worked with International Lymphedema Framework to send survey on quality of life for children and young adults
Connected with Pro-Lymph for help with lymphedema experts
Launched the ALA virtual newsletter to help members stay connected during the pandemic
Designed our very first virtual booth for the Canadian Lymphedema Framework (CLF) 2021 National Lymphedema Conference
Listed with 811 Health Link and 211 Distress Centre
Worked with 90 other charities and AGLC to help improve processes for funds for all Alberta charities
Participated on the AHS Lymphedema Advisory Group
