Rare Disease Day 2011 - stories posted

I am very pleased to find my story was posted on http://rarediseaseday.us/patient-stories/patti/ = AWARENESS!!! :slight_smile:


Good job!! It’s very well written.

Thanks, Ben!

Am hoping others will share their stories to help get the word out. :)


WTG Patti, and well done.

And thanks for letting us know about the site too. I submitted mine but haven't seen it there yet.



Thanks Tori. :)

I'll be looking forward to reading your story!!!

take care,


Congrats & yay for Tori!!!

Read her story @ http://rarediseaseday.us/patient-stories/toris-story/

I'm so happy for you! :)


Woo hoo…good job!!!

Hey Patti,

You are really getting yourself out there and in the minds of lots of people. It's important to raise awareness on maladies that are rare and consequently poorly understood. Bravo!!!! Let us know about your film, too.

Hi Libby,

And thank you. It's exciting to find outlets to help bring awareness!! :)

The video has had a lot of views, so that's exciting as well! http://patients.aan.com/neurofilmfestival/index.cfm?event=vote:video.view&film=121

How are you doing???

I'm doing well--thanks. About to see Dr. Apuzzo at USC. It's ben a long wait and I'm looking f orward to hearing what he has to say.

I am reading UNbroken, a book by Laura Hillenbrand, also the author of Seabiscuit. She is often bedridden with crippling vertigo and is almost always house-bound even on her best days. And yet she has focused her often-meager energies, sometimes for just a few minutes a day, and ended up writing two amazing books. Now she is talking more about her not-so-rare disease publicly, and I know that others with it (Chronic Fatigue Syndrome) feel that they have someone with a voice to speak for them. Your film and piece do this too. I hope all the people with CVMs find their way to your work!

Congratulations! I am so happy your story made it. Look forward to reading it.