05 March 2013

CF in DC

{EDIT: Er, cancel that.  March On The Hill was cancelled early this morning due to snow and the closing down of Congress after 1pm today, what would have been our first day of March On The Hill.}  

This week, I am traveling to Washington DC to attend two Cystic Fibrosis Foundation conferences.  One conference, towards the end of the week, will be the same conference I attended last year called the “Volunteer Leadership Conference.”  I am very excited to attend this conference again this year and to have the opportunity to meet lots of amazing people from around the nation who tirelessly work to help us find a cure for CF.

The earlier conference I will attend this week is called “March On The Hill.”  Last year, I signed up to volunteer as the Cystic Fibrosis Foundation's State Advocate for the Northeast Texas Chapter.  The CFF has volunteer advocates from around the US.  This week, I will join dozens of these advocates on Capitol Hill to help lobby members of Congress for adequate funding of the FDA and legislation that supports getting effective medications into the hands of those with Cystic Fibrosis.  This is a bi-partisan effort.  I am not going to Washington DC to share my political views.  I am going only share about Bennett’s story and our need for a cure.

Advocating in Washington DC is something I am looking very forward to doing, although it’s also the conference I am most nervous about attending.  I'm nobody special - no political science degree here - just a mom with a little boy who needs help.  But I look forward to learning of new ways I can advocate for Bennett.  

Brian would normally join me for these conferences but he must stay back to present at a theological conference in Dallas latter this week.   I'm sad he isn't able to attend but he's always an equal partner in our efforts to help Bennett.

I'll post this week about what I'm learning through both of these experiences.  The awesome thing about CF Foundation is that, since it's an effective advocacy organization, it tends to benefit not just the 30,000 people with CF it represents, but it tends to benefit all those in the United States with orphan diseases.  I look forward to this week and being a part of something that is bigger than just helping our son.  I look forward to representing all of those with CF as well as those who suffer from under-researched little-known diseases that do not yet have a cure.  Finding a cure is half the battle.  The other half is getting it in time into the hands who need.

Will share more details soon... 

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