Tag Archive | Awareness and Advocacy

Tweeting the Surgeon General for #NPHW ~ Kudos to Patients for Great Questions

It took more energy than I had to submit what I could for IDSA’s comment period on it’s final day.  It was not an easy process, and I am still exhausted and recovering. So many things happened yesterday that the events will likely spill into multiple posts and will be things we remember for a […]

Personal Overview of the IDSA ‘Public Comment’ Period ~ Part 1

We all know how important this is.  Not all patients know all the pieces or felt ready or physically or mentally able to respond directly.  I’ve had firm plans to submit my own comments, as well as question suggestions (based on IDSA President Calderwood’s statements following his meeting with The MayDay Project), and to respond […]

IDSA Lyme Guidelines ~ Background Resources (with Notes for Comment Period)

Foreward ~ I’m so behind on my own comments, and the deadline for the IDSA Public Comment period is so fast approaching, that multiple posts with relevant or even related content or links are going to published in a rough state, including things like un-formatted and un-annotated lists of links, just to get the information out […]

Preliminary Notes ~ IDSA Comment Period and Mayday Project Webinar

Preliminary Notes ~ IDSA Comment Period and Mayday Project Webinar

This post has been tidied a bit (3/12/15) but is still intended to provide just preliminary information regarding the announcement of IDSA’s 30-day public comment period (ending April 9) and the Webinar held March 10th by The Mayday Project. Links to the primary documents plus webinar resources are listed below, and background info regarding past […]

Support French Lyme Patients ~ Send Support For Proposition N° 2291

Support French Lyme Patients ~ Send Support For Proposition N° 2291

I’ve posted twice lately about state-specific proposed legislation (Massachusetts and Washington) because even letters from out of state expressing information and support for better care have been catching representatives’ attention and helping the Lyme-patient-residents of those states. There is also, it turns out, a French Proposition (draft included below) that will soon go before the French […]

Email Massachusetts Senators (How and Why) Re H.D. 469 ~ Insurance Coverage for Lyme

Email Massachusetts Senators (How and Why) Re H.D. 469 ~ Insurance Coverage for Lyme

“There is currently a two-week window during which representatives can decide if they want to support the proposed bill known as: H.D. 469 An Act Relative to Lyme Disease Treatment Coverage, so we need to act quickly.”   The who, what and how of this issue was very well said and accounted for in a […]

My Son’s New Year’s Resolution for Lyme Awareness

My Son’s New Year’s Resolution for Lyme Awareness

My son’s teacher took the time to type and email my son’s resolution from a project in class, and it truly melts my heart.  It’s certainly not easy for either of my kids to have a mom with Lyme disease. Christopher’s Resolution ~ (9 years old, 3rd grade) My New Year’s resolution is to finally […]