No more Negative Nancy?

….Probably not.

As I have written many times before, this blog is my safe space, literally, to get pissed about what is going on in my life now, usually my struggles and heartaches as I work to process brain tumors and Rare Disease.  I will always be honest here and to myself.  I owe myself at least that much.  It’s not pretty most days; thank you to those who are with me on this!

But, changing gears just a bit, I am really excited for this year’s Rare Disease Day.

Each year since my diagnosis I’ve hoped and always wanted to plan something “big”.  A few years ago I was able to hold a fundraiser and the money raised was donated to Global Genes and the PTEN Foundation.

That event was so incredible and I was able to have Jaana, my awesomely talented friend take photos of the event.  It was such a great time!

Unfortunately, this year I wasn’t able to plan anything.

BUT, I do have something else going on to bring awareness for Cowden Syndrome and Lhermitte-duclos Disease and I can’t wait to show it to you all!


Support Support Support Please!

Hello friends and family:  Please take a look at this link and consider buying a custom t-shirt.  All monies raised will go to the PTEN Foundation:  Connect. Collaborate. Cure.

Thank you!

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.