Jumping into the Big Pond

Next month, my husband and I are going to the first annual RARE Tribute to Champions of Hope Gala and the patient advocacy meeting they are hosting the next day.  This will be a place where patient communities, like our Little Miss Hannah Foundation, can engage with each other and experts on various topics ranging from legislation to non-profit business models.

At the 2012 Tribute Gala, we will honor individuals for their contributions in the areas of advocacy, science/research, industry, policy and global collaborations.

Please join us for a night of inspiration and hope as we recognize individuals and organizations that are working tirelessly to help millions of children and families impacted by over 7,000 different types of rare diseases.

As ANYONE who reads my blog knows, I am very, very passionate about create awareness for childhood rare diseases.   It isn’t something that I do for fun.  It is something that I HAVE to do.  It is so hard to explain because before Hannah I never felt very passionate about any cause.   But this has grabbed my heart completely.

Awareness for life-limiting children’s rare diseases, my focus…It is something that just has to be done.

Chris Mann

So next month, we are going to this conference to meet all of those people who have fought so hard for rare disease.   The “celebrities,” if you will, of rare disease awareness.  I have no idea what to expect at the “Gala” that night, but I am thrilled that we are able to go.

Best of all, I get to be a small part of that evening.  I was asked  to submit Hannah’s story for their “patient stories” section of the program.  To me, that was a huge honor!   All these people from around the country are going to read about me and my daughter – me, just a “Mom on a Mission” living in Vegas.

Besides, seeing Chris Mann (from “The Voice”) performing that night at the event is NOT a bad thing either!


  1. I submitted Gage’s story for the patient stories section as well! I am so excited to meet you in person:) And I know what you mean. I don’t do any of this for fun, I feel a pull to do it that is very strong. It has become a part of me. And when I attend meetings like this, I feel like that is where I belong, as opposed to other “jobs” I have had. See you soon, Mary