Growing a CF (rare disease) Advocate

"When one person in a family has Cystic Fibrosis, the whole family has CF."  I've heard this is true for most families dealing with a life long challenge.  And, while CF doesn't define our family, we all have responsibilities to bear...even younger brothers without CF like my son Chase (13). 

In our house, part of that responsibility means to actively seek ways to make a difference in the lives of CF patients.  It's been that way since the day Kate was diagnosed in 2000 (here's Kate).

Some days, making a difference might be as simple as hanging out with his sister while she does her breathing treatments and physical therapy (likely trying to make her laugh).  On other days it could mean selling homegrown pickles (with the profits going to the CFF), asking people to support his walk team, even wearing a tie to a fancy fundraiser.  Making a difference also means visiting time with his sister when she's in the hospital for an extended stay. 

Like Bo knew baseball...Chase knows CF and like other siblings, he'd do anything to make it stand for Cure Found.  They're born advocates.  They are powerful. They are the voice of their loved ones. 

One way this voice started being heard more clearly began 8 years ago in Washington, DC at the first Cystic Fibrosis Foundation’s Teen Advocacy Day.  A special day where teens with similar stories, worries and dreams from across the US gather on Capital Hill to represent their loved ones living with cystic fibrosis by meeting with senators, representatives and congressional staff to advocate more resources dedicated to CF research, treatment and care. 

This years Teen Advocacy Day is June 23rd and I'm very proud to say Chase will be representing the great State of Maine.  He's got a lot to say.