Wednesday, October 28, 2015

Giorgio Foundation Part 1

When I am asked to speak about Neurofibromatosis....There really is no hesitation to saying YES.  It's my thing.  I feel great doing it...Even when the nerves are overwhelming.

This last speaking engagement was awesome.  I met Erin through e-mail, after she reached out to me to tell me she had read my book.

Erin and her family are dealing with a diagnosis of NF in Giorgio, who is almost 10.

I was asked to come out to speak at their event and I could not have been more thrilled!

It's ALWAYS an honor when someone reaches out to me, based on my story, and how I choose to live my life, even while facing the uncertainty that comes with living with Neurofibromatosis.

So now that I had been asked to speak....I needed to get moving on my message!!

My message always revolves around THRIVING with Neurofibromatosis....But I Tweak it, based on who I am talking to....

This is when being married to a speaking coach pays off BIG TIME!!

Rich helped me fine tune my message and even got me to attend a Toastmaster meeting to practice my speech in front of a live audience!

I have to say....The more I do this speaking thing....The easier it gets, and the more confident I become!!

Erin and her family invited me to their home in New York, which was so warm and inviting...I felt right at home!

The next morning, we all took a private plane to Pennsylvania

I had so much fun playing games with the kids during the flight  :)  And they were a good distraction for me, since I was scared of the whole "private plane" thing. :)

I was able to see where the event was being held....And where I'd be standing to give my talk.  It was a little intimidating.

 But I did it.  It felt GREAT!  This was by FAR the largest crowd I have ever been in front of!  Having people come up to me after, was the best part.

The whole even was a success - And raised over $200,000 for NF!  I was so happy to raise awareness for Neurofiibromatosis, in a positive and encouraging way!

Thank you Borzellino family for inviting me into your home and your hearts!  It was truly an honor to be a part of something so successful!

Please stay tuned to PART 2....Where I will talk more about my speech....And what this event was all about....I may even post a video!!

Thursday, October 22, 2015


I feel it in my gut.  The nerves.  The excitement.  The adrenaline!

This weekend, I have the privilege of flying to Pennsylvania to speak to a crowd of several hundred, to help raise awareness for Neurofibromatosis.

A wonderful organization called The Giorgio Foundation has invited me to talk about how Neurofibromatosis has impacted my life.

I am honored and so excited!

You know that feeling you get, when you know you are doing EXACTLY what God put you on Earth to do....?  That's feeling I have!!

I will take video and post it here when I return....