Links of reference

If you don’t already know, I have a place on my blog where I’ve gathered links of PTEN/Cowden Syndrome information.  I also wanted to share that there is a PTEN Hamartoma Tumor Foundation website:  Please visit it often!

Thank you!

Rare Disease Day 2015

If you would have told me July 28, 2011 (the day after the first craniotomy) that on this day I would be working out with over 40 people and coordinated a week-long Rare Disease Day event – I would have told you to stuff it.  There’s no way I ever could have imagined today…even on my best day after brain surgery!  This was my first event but I tell ya – I’m hooked!  Look out 2016, hopeforheather is coming for ya!

Together, with the help of the exercise studio I work out at and the support and generosity of friends, neighbors, and family we raised $434 for Rare Disease Awareness! The money will be donated to  Global Genes Project and PTEN Foundation.

There’s so much running around in my mind that I don’t know where to begin to write.  A humble thank you will have to suffice for now.