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!
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.
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!
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.