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.

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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.

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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.

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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.

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Important Finding In LAM & TSC: Part I

After I was made aware of this finding & commented on it,  Dr. Chada & Dr. D’Armiento graciously gave of their time to break down the science for me as well as answer a few questions I had posed with a series of emails & a few calls.

This is the first half of the questions I posed to them after reading through the research paper, picking it apart, talking with a few friends & leaders to connect a few dots, & then comparing my prior learnings in research to date to connect the dots to this finding.

I hope that the introduction I posted yesterday was helpful in simplifying some of the terminology.

For ease, I tried to group similar questions & responses together.  I had at least 16 questions that came out of this study. So the first half of those are below. The rest will follow tomorrow.

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Potentially Imporant Finding in LAM/TSC Research

I woke up to a pleasant surprise this morning.  I have to thank my tweetchat & Twitter friend, Joe Babaian, for passing along this lead.

This release is very preliminary. That said, I found it interesting as I have always felt (as have others) that it wasn’t just the MTOR pathway alone that was at work in both of my diseases (LAM & TSC).  This seems to confirm that theory.

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