11 March 2013

March On The Hill 2013: Day 2, Evening

After a full day at the Capitol and a few hours of rest, our group gathered Thursday evening for a reception dinner at the hotel where we shared stories of our day.

Chris and Noreen, a great couple who has been at this for years.  They have a son in high school with Cystic Fibrosis.

Noreen, me, Mary and Angie - Noreen is a CF mom and all around wonderful person.  She does everything she does with such grace.  Mary is the VP of Governmental Affairs for the Cystic Fibrosis Foundation.  She is incredibly smart, talented and does an amazing job with regards to Cystic Fibrosis and the development of public policy.  We are so lucky to have her at the CFF.  Angie is a CF mom of two teenage girls, a veteran volunteer and someone I absolutely admire.  Angie's got bounds of energy and passion for advocacy that I love and want to soak up!

Congressional Representative John Fleming (R-La) came to speak at our event Thursday night.  He has his own very special and very personal connection to Cystic Fibrosis: Bennett is his grandson.  I am super proud of my father for his work in Washington DC as well as how he is a champion for those with Cystic Fibrosis.  My mother, also pictured, is a loving grandmother to the boys and a fabulous mother to me.

This is Peter (left) - such a great guy - fun to be around and passionate about finding a cure for Cystic Fibrosis.  His teenage daughter, who suffers from CF, has been on the life-changing drug Kalydeco for a short time and is showing amazing improvement in her lung function.  Peter became emotional this evening as he shared with us all how lucky he is not to have to worry about losing his daughter and how he wants that for all of us.  Peter is also the volunteer chair of the Cystic Fibrosis Foundation's Annual Fund and does a phenomenal job raising money for a cure.

I must add something about this picture (above).  Oliver (who adores Peter, by the way) is in the picture because he had a chance to come with me to Thursday's dinner (since this year's dinner was relatively low-key due to the weather and our having a smaller-than-normal group at March On The Hill).  I chose to bring Oliver to the dinner because I wanted him to get to watch his Congressman grandfather speak as well as get to see what the meetings I to go to are all about and how what Brian and I do relates to Bennett.  So often, Oliver sees me do things for CF but has no idea what I'm really doing.

At the dinner, each person in the room shared informal introductions.  When it was Oliver's turn to introduce himself, I asked him if he wanted to share (since he was just a kid and most everyone else were adults).  He indicated he did so on his turn, he stood up on his chair and said in a strong voice, "My name is Oliver.  My three-year-old brother, Bennett, has Cystic Fibrosis."  And then, completely unsolicited and to my surprise, he added, "And we need money for a cure."

The crowd of mothers, fathers and friends of those with Cystic Fibrosis broke into laughter and applause.  Oliver knew we were there because we were working towards asking people for money for a cure.  I hadn't realized that he would feel the need to ask for himself!

I was incredibly proud of him in that moment.  I realized, right there, that, on some level, he gets it - he got why we were there and is beginning to really understand why I do the things I do.  To my surprise, he is beginning to see he too can be a part of this process, of helping his brother.

Clearly, Oliver had not just seen his coming along with me to an adult dinner as an opportunity for his Mama to advocate for Bennett but for him to do so, as well.  What a gift Oliver is to his brother!  And, more importantly, what a gift he is to me! :)

This dinner concluded our March On The Hill conference until we convene again next year.  I can't wait to come back and do it all again!!


  1. I just cried proud Mommy tears for you. What a bright little boy to put all that together! Bennett is so lucky to have him as a brother!

  2. Precious! There is something about a sibling fighting for the life of their sibling that is amazing! My oldest son is ready to call businesses again this year to ask for donations for a cure for his little sister!! LOVE IT! So proud of Oliver. Way to go, for both of you! =)


    1. Tiffany, that's beautiful to hear your son calls businesses asking for donations for a cure for his little sister. It's really wonderful to see how you guys make fundraising a family-affair. I hope to do that more and more each year as well. It helps siblings feel like they can actually "do something" when they see their sibling hurt!


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