Visibility is key in terms of awareness and outreach, but also in terms of geographic awareness.
We are situated in one of the most beautiful regions of the world, visited by people from around the world. One of the challenges patients face here is a lack of awareness of the true (and ever-expanding) distributions of Lyme disease, co-infections, and vectors among physicians and health agencies. But the lack of public awareness is part of how most of us became long term patients, instead of acute-onset-treated former (short term patients), which also poses a threat to visitors to this region that may not adequately consider tick born diseases if mysterious symptoms arise later.
We plan to continue to share our donated photos there, via #lymeoutside, #recycledlyme, and #biteoustide #photosweep efforts earlier this year. Tag us if you share photos you’d like us to share, too.
June 1, 2015 – Ottawa, ON – Public Health Agency of Canada
Today, the Chief Public Health Officer of Canada Dr. Gregory Taylor launched a consultation process to support the development of a Federal Framework on Lyme Disease.
This consultation will solicit perspectives on Lyme disease from the medical community, governments, patients’ groups, as well as individual Canadians.
Specific feedback will be solicited on three key themes of the Federal Framework, as outlined in the Act:
National medical surveillance: to track incidence rates and the associated economic costs of Lyme disease in Canada.
Guidelines and best practices: the prevention, identification, treatment and management of Lyme disease and sharing of best practices throughout Canada.
Education and awareness: to develop standardized educational materials for use by Canadian public health providers to increase national awareness about the disease.
The Public Health Agency of Canada’s current Action Plan on Lyme Disease will serve as a platform for the development of the Federal Framework. It aims to mitigate the risks to Canadians posed by Lyme disease through three pillars: engagement, education and awareness; surveillance, prevention and control; and research and diagnosis.
Stakeholders and the public are invited to participate in the online consultation. Comments will be accepted until June 30, 2015.
A Conference will be held with invited stakeholders later this year where the input received through the consultation will inform the development of the Framework.
A high school teacher and junior high teacher were instrumental to my diagnosis, and I finally caught up with one of them by letting them know about the booth (having not spoken since my diagnosis). There’s a slight chance I may meet her in person (for the first time) one of the days of the booth, but we will definitely have to meet soon.
Knowing the trip to Arlington would super-cede any real world, in person celebration of launching our site and our effort, we opted to ask for help with celebrating via photos from supporters in and beyond our region. This was fortunate, as participating in rallies and all the associated pieces took every bit of energy of every person able to come.
By the time we quietly launched May 1, we had supporters in seven countries, numerous states, and three continents, and new partners we are excited to work with. We’ve begun collecting map locations (read more here on how and why) and are already seeing some preliminary patterns emerging.
Myself and others involved so far have had our challenges recently, and/or overlapping Lyme world commitments. So we are grateful for the support via photos.
There is more to come soon, but this is a preview in the form of an initial celebratory image, from Arlington, pending more to come soon, from the photos shared with us and from the events we participated in on and around May 1.
We regret the delay in posting, but all participants will be working to survive their travels home and then working on recuperating from more activity than most of us were really well enough for (but that we all know was worth the cost).
Please help us get Lyme disease patients in the Norther Rockies #onthemap! This is the first of a few requests in an effort to gain some preliminary information, increase our networking, seek partners, and keep finding each other as we gear up to ‘launch’ May 1.
Please look around and start to get to know us as we build our site (and let us know if you’d like to help in some way now or in the future).
We will have an outreach/information form ready Wednesday so we can begin to collect information for the map and to start to answer some of our basic but yet-unanswered state and regional questions (a much larger, long-term undertaking).
Starting Now you can share the Facebook page and the soon-to-come event page to help us reach as many people as we can within and beyond our region, and please be sure to help us with our requests as we get ready for our May 1, 2015 Launch!
Please share any input, feedback, or suggestions here or via soon-to-come comment/contact forms (and further contact options). In the short-term, contact can also be made via Invisibly Lyme Montana (facebook page, website, or twitter).
If you are interested in partnership opportunities (support, collaboration, other), becoming a member or supporter (as an individual, group, organization, or business), or becoming more involved immediately, consider the following options and use the following links:
If you are a member of the media and would like to know more before April 15 please contact Invisibly Lyme Montana and/or Angela Daenzer (preferably in multiple locations to avoid spam filter mishaps). We intend to reach out later in the month, but would welcome your coverage of certain key points and requests sooner if you are interested.