CF ADVOCACY DAY IN TALLAHASEE
- Travis Suit
- Jan 18, 2018
- 2 min read
Earlier this week, I had the opportunity to visit Florida's Capitol for the Cystic Fibrosis Advocacy Day with the Cystic Fibrosis Foundation. It was an eye opening and memorable experience!
I was able to connect with other CF advocates and families from all across the state, and learn about their stories and how their lives have been affected by this disease. It was motivating and humbling to be with other folks who deeply care about the progress we're making as a community on all fronts.
Some interesting statistics:
-There are an estimated 1,600 people living in Florida with CF, 3rd highest in the nation. Many of the people and families who relocate here, do so because our warm, humid, salty air is better for their lungs versus a cold, harsh, dry, arid climate.
-Over 40% of the children and people with CF in Florida, rely on Medicaid to cover the exorbitant cost of their medications, hospital visits, and therapies.
-Piper is on a drug called Orkambi, it roughly costs $300,000 per year. This drug is one of the revolutionary drugs to come out recently that treats the underlying cause of CF and not just the symptoms.
-The average hospital stay for someone with CF is 2-4 weeks.
When famed sports writer Frank Deford's daughter Alex was born on October 30th, 1971, they had no idea at the time she had cystic fibrosis, or that she would only live to be 8 years old. He wrote a book after she died called 'Alex, The Life of a Child'. The advancements since then have come a long way, but there is still much work to do. No matter how old your children are, you shouldn't be faced with seeing them die before you. This is the wish of any parent.
Our efforts will relentlessly continue until a cure is found. Please understand how much your support means to the CF community and how much to means to us.
Travis & the Piper's Angels Family
Inspire Every Breath!
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