Kristi McAllister – Cystic Fibrosis

By / CNOtes / Cystic Fibrosis, Krisit McAllister, Meeting Notes, Noon Notes /

Phather Phil’s Prayer

Heavenly Father, many of us have thought, why you don’t talk to us like You did to those in the Old Testament . I think You still do but we are too busy to hear You, plus our egos get in the way. Just before Jesus rose to be with You, he sent the Holy Spirit to live within each one of us. It’s Your Spirit that gives us those brilliant ideas to solve our problems. Most of the time we credit those times to our own intellect. Help us grow closer to
You by listening to Your Spirit that speaks to us. May our actions reflect Your love and show that life is better thru Optimism and help us listen to Your still small voice within us. Amen!
All Photos from the Meeting are Here

Today’s Speaker

Scott Langer introduced Kristi McAllister, the development director of the Greater Cincinnati Chapter of the Cystic Fibrosis Foundation. During his introduction Scott noted that his grand-nephew has Cystic Fibrosis (CF) and was at the 2018 CNO Easter Hunt.

Kristi asked how many of us had heard of CF. Most of us had heard of the disease but could not accurately describe what it is.

From Wikipedia Entry for Cystic Fibrosis: Cystic fibrosis (CF) is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine.

Both parents have to be a carrier of the CF gene variation in order for a child to have the disease. If both parents have gene variation then 25% of children will have the disease, 50 % will be carriers and 25% will not be carriers or have the disease.

If you would like to see how breathing is affected by CF you can simulate it by breathing through a straw for several minutes.

Kristi said the mucus that builds up in the body is similar in consistency to peanut butter. You have a much easier time getting sick in general and recovery from even a simple cold can take a month.

In the U.S. 33,000, have the disease, which is about 0.009% of the population.

Life expectancy in 1955 was 5 years. Now the median age is 47. Over half of all those with CF are over the age of 18.

CF can be hard to understand because it feels odd to know someone is so sick and yet look so normal in appearance.

It is a huge effort to deal with the disease. Treatments have to happen every day, whether they are sick or not. These include breathing treatments and often antibiotics. The affected may have to take as many as 50 pills a day. Many are enzymes to help them process food. It can easily take 2 hours a day for these treatments. The cost can be over $300,000.00 per year in drugs to help those afflicted with CF.

There has been advances in helping your child with Airway Cleaning Techniques (ACTs). A High-Frequency Chest Wall Oscillation (the Vest), has become available that can take the place of a parent having to clap their child’s back or chest with a cupped hand. The goal is to cough up the mucus.

The CF Foundation (CFF) was founded in 1955 by parents of a child with CF. The primary mission of the CFF is to find a cure. Next are advocacy efforts to work with health insurance decision makers. A large effort is in building community. There are many more adults that have the disease than ever before because of the success of CFF efforts.

Parents dealing with CF need to find a doctor with direct expertise and experience with CF. The disease is rare enough that doctors need deep and specific training to help patients living with CF. In Dayton the Dayton Children’s Hospital is a CFF approved location. The CFF foundation reviews each approved location at least once a year.

Parents of children with CF are 2-3 more times likely to have anxiety or depression.

Genetic tests exist to determine if you are a carrier, but they are not perfect as we now know there are several gene variations that cause the disease.

 CFF Fund Raisers near Dayton

From https://www.cff.org/Cincinnati/: Volunteers are the key to our success and the lifeblood of our organization. We have many opportunities for you to get involved. Your participation in any way will help us achieve our mission – finding a cure for all people with CF. Take a moment to check out our upcoming events and learn more.

Today’s Guests

This was rare – no registered guests today ! Invite a friend and show off our wonderful club!

 Birthdays

Member Birthday
Jeff Busch April 29

Membership Anniversaries

Member Month Day Joined # Years
Donna Huss April 24 04/24/2012 6
Patrick Swan April 24 04/24/2012 6
Daniel Passidomo April 25 04/25/2007 11
Mike Witt April 26 04/26/1994 24

New Member Readings and Inductions

Name Sponsor 1st 2nd 3rd Reading or Induction
Jeff Zaret Amy Barker Induction (Welcome back to the club , Jeff!)

Sergeants at Arms

Member Infraction
Bob Foster Wearing shorts and flip flops
Bob Duffy Left front door of Yankee Trace wide open in a blatant attempt to freeze the sergeants
Greg Griffin Being a tattle tale about Chris McAlpine email typo
Mike Yoder Telling a sergeant he was expecting a fine
Mike Bevis Should have brought a guest today since no one else did
Joe Kronenberger Cell phone going off during the meeting
Vince Reidy Cell phone going off during the meeting
Jeff Zaret Welcome back to the club

Happy Bucks!

Member Reason
Rachel Goetz CHS performing the play “Legally Blonde”
Dr. Dan Passidomo Springboro Jr ROTC took First place in state this year
Jane Fiehrer Stan Fronzaglia spilled his coffee near her, but not on her
Phather Phil Going 8 days without a cigar (he commented that so far the only one who is not happy about this is HIMSELF.)
Debe Dockins Finally finding a 3rd Judge for the district oratorical contest

 

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