A Bothersome Statement

I’ll be posting a bit more often this month because I want to support the first WorldWide LAM Awareness Month.

Continue reading

Draft of FDA Testimony

Representing the TS Alliance & The LAM Foundation both when it counts in research & behind the scenes has been something I have championed for a very long time as my health has allowed.

Continue reading

From NHS Trust: Transplant Patient Comes Face To Face With His Old Heart

This article really struck a cord as I read it.   It reminds me of the reasons why I filled out a consent form to donate my old lungs to LAM research & also at least get tested to see if any of my other organs or tissues could be donated to someone who needed them.

Continue reading

My Dry Run Was Also A Donation Dress Rehearsal

My dry run on July 2 was also a good test to figure out the process of notifying my LAM research team about donating my old lung tissue & organs to research into my rare diseases.

Continue reading

WorldWide LAM Awareness Day

I have had LAM for over 12 years now. I can say I love my lungs but hate what this disease does to them.

For awhile, that distinction was hard to draw. I resented my lung disease as much or more as I resented my lungs not being able to keep up.  But that was errant thinking.  The fact that they lasted over 12 years & that they keep fighting now even as I wait for new lungs amazes me. I didn’t give them enough credit for their resilience & ability to keep going no matter how tough & intense the fight.

I know the women in this video. They are but a few of the many friends I have made on my journey with this disease.

Continue reading