February 9, 2015

HB 94: Utah "Right To Try" Act

HB 94 is Utah's "Right to Try" Act.  Right to Try allows terminally ill patients access to investigational medications and devices that have completed FDA phase one safety testing.

We are extremely grateful to Jonathan Johnson, Rep. Gage Froerer, the Goldwater Institute, and fellow rare advocates Jen and Stan Summers for helping to get this important piece of legislation to the floor.  

Many thanks to Jen (Talan's mom) for the photos!

February 5, 2015

Obama

I fell off the blog post wagon because THIS happened last week.

Kids are sick, Matt is out-of-town, but life is busy and beautiful.

PS-If you live in Utah, you better register for Rare Disease Day!