@NorthernRockiesLyme on Instagram

download up to mon pmWe’ve recently opened an account on Instagram, in order to reach more patients and to reach a more diverse group of outdoor-active people.

VISIT US: @northernrockieslyme

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.

PicMonkey Collage all together

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News Release (Link) ~ Public Health Agency of Canada launches public consultation on Lyme disease

News Release

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.

>>>Full Release Here<<<

FCCLA Lyme Disease Challenge Booth at Columbia Falls High School Tomorrow!

I’m so proud of my daughter for this idea and grateful to the leadership club for making it happen.  They will have a booth with facts and limes ready for any students that want to do the challenge.

You can read more about the challenge at LymeDiseaseChallenge.org and LIKE THEIR FACEBOOK PAGE ~ HERE~.  You can also see my daughter’s earlier challenge videos, my son’s videos, and featured regional challenges (so far) on our Regional Challenges Page (including a link to our challenge to Ride For Lyme, which they have accepted).

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.

Stay tuned for more from this proud mom.

Lymediseasechallenge.org
Lymediseasechallenge.org

Preliminary Launch Post….More to Come!

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).

Thank you all and more soon!

Photo Sweep 2015 ~ New & Used Photos ~ Please Help Us & Other Groups SHOW Our Story

Anyone, Anywhere: The Northern Rockies Lyme Disease Coalition needs your Lyme pictures!

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Bite Outside Photos: Take a selfie or photo outside with or biting a lime. If you already have an outside Lyme disease challenge photo, send that. Tag with #biteoutside

Lyme Outside Photos: Past or present photos of you enjoying the outdoors. Please note where you are or where you are from in the picture. Tag with #lymeoutside

Recycled Lyme Photos: Send photos you’ve created through other campaigns or other photos, images, or art you’ve created that are meaningful to you. Tag with #RecycledLymePhotos

*Send your pictures to: northernrockieslyme@gmail.com or post on our FB page: http://goo.gl/czH1cQ

Continue reading Photo Sweep 2015 ~ New & Used Photos ~ Please Help Us & Other Groups SHOW Our Story

Request 1 ~ Locations and Help ~ #OnTheMap #NorthernRockies #LymeLivesHere

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).

Request #1 ~ Here’s what we need most so far!

Continue reading Request 1 ~ Locations and Help ~ #OnTheMap #NorthernRockies #LymeLivesHere

We Need Your Help, Starting April 15! #OnTheMap #LymeLivesHere #NorthernRockiesLyme

We are so grateful to (Candadian Lyme-patient) Artist Brandi Lee Ethier for allowing us to use her extremely inspiring, still-in-progress painting. Thank you!

We are gearing up to launch May 1, but we will need help from our Lyme community.  By this Wednesday, April 15, we will be ready to start asking some of our biggest pre-launch questions.

One of our biggest needs will be your location and some basic information.

This will help build an initial map for educational and general purposes, but especially for increasing VISIBILITY and AWARENESS for our region, beginning with the upcoming MayDay Project Rally at IDSA Headquarters in Arlington, VA, April 29 and May1, 2015.

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!

A Multi-Purpose Pre-Request, Via Invisibly Lyme Montana & Others:

Letters To Strangers for Arlington MayDay Rally ~ Request Via Sheila Bush Can Also Benefit NorthernRockiesLyme.org

Multiple requests in the coming weeks, as with the one above, will offer mutual benefit to this group and to on-going or additional new campaigns or efforts by other groups, so stay tuned….

You are Invited ~ Share this site and Our 1st Set of Action Items Beginning April 15

In a few days, you will be able to look back and know that you were one of the first ever to view this site and that you somehow found it or had it shared with you before the rest of the world.

In the mean time, please have a look around, particularly the About Page and Draft Goals & Needs Pages.

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:

  • Partnership/Support Opportunities, see Supporters ~ Stay Tuned
  • To help with ideas, fine tuning, and testing, message me via Invisibly Lyme Montana on facebook regarding a private/closed planning group on facebook (fb link above)
  • Preview initial calls to action and action items, see Short Term Needs
    • stories, accounts
    • basic information (tools/requests coming soon)

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.