Making Waves: 3 parts of US Lyme Advocacy

The first part of Making Waves – discussed how we are not too small to make a difference and a bit about the project itself.  Now we continue where we left off …

We are the ripple effect.  Individually, we are each one tiny pebble being tossed into the puddle of life and watching that ripple make changes.  You may wonder why we aren’t just stepping into an already existing network or working with one non-profit.  One of the things that will make US Lyme Advocacy special is that we plan to work with many non-profit organizations.  USLA was created out of the need to collaborate with one another in order to raise awareness through the entire United States. Ultimately, our goal is to work with a variety of organizations, existing networks and support groups throughout each state.   Each state will have an official leader.  We have already collected 25 leaders to head up each state.  Some leaders may find the work too challenging and may step aside to allow others to take their place while others may flourish in this type of a setting.

There will be three parts of each state’s Lyme Advocacy project.  The first thing to be done for each state is to create the website after we receive a volunteer to head it up.  The website is going to be used as a way to collaborate information, to generate word to the public and also helpful to those whom are not on social networks.  Our objective will be to provide information to people regarding support groups all over the state without having to go to a variety of different locations to find this information.  As word spreads of each state’s existence, our hope is that the leaders of support group will contact us to let us know of their monthly meetings.  Then our leaders will communicate with those support group leaders monthly to find out the exact time and location of the next meeting.

An example of this can be found at  NC Lyme Advocacy.   NC Lyme Advocacy was the first to be created and it was created out of the need to share a letter campaign to community members that were not on social media.  In addition to the support group information, the website will be utilized for announcing events that are being sponsored by a variety of groups, non-profits and individuals.  We will share the contact information for those events.  These events may include question and answers from doctors, documentary screenings, Lyme awareness campaigns or other important events going on in the community regarding Lyme Disease. Lyme patients had to go to a variety of different sources to find this kind of information prior to the NC Lyme Advocacy project beginning in January of 2013.  Now they can go to NCLA and find support groups, events and other information.

The second part of each state’s Lyme Advocacy project is the  Facebook Group.  There are many FB support groups, but under the US Lyme Advocacy umbrella it is our hope that these groups will become a round table for discussion as well as brain storming for creating awareness in each state. These groups are meant for Lyme patients (sometimes spouses and parents) for their own states.  Patients that want to work together to create awareness and advocacy will work together in their closed group setting along with US Lyme Advocacy to create change and unite our voices will be welcomed into these group settings.  Members will be able to discuss upcoming projects, either created individually or by different non-profit organizations.  Members will also be able to volunteer their time for different event projects going on in their state and even create those events.  This group is to be used as a private place to discuss these important issues.

The third part of the US Lyme Advocacy state projects are the Facebook Pages.  Many states have not gotten the third part off the ground yet.  This project is a process.  However, the FB Page will be a public FB place for awareness.  The leaders will be able to post things there that they may not want permanently on the website.  For example, this may be where many links are posted.  The Lyme Leader of each state will be the moderator of this page.  The page will also be a way for people to reach out to the leader without having to directly message them on their FB page which will protect their privacy.

Feeling discouraged?  Feeling too small to make a difference?  Think it’s been tried before and what makes this attempt different?  We hope not.  Come join our project at US Lyme Advocacy.  Ask not what we can do for you, but what you can do for US.  Visit us at:

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