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


The Compassionate Use Quandary

When I come across items like this in Rare Disease Report,  I feel very ambivalent.  While much of the comments I can’t argue with,  I don’t entirely agree with this stance on compassionate use & right-to-try laws.

Continue reading