Parker’s Pride- Fighting to Cure CF

Parker’s Pride- Fighting to Cure CF Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Parker’s Pride- Fighting to Cure CF, Logan, WV.

This page was created to post updates on Parker’s health, research on new breakthrough therapies, fundraisers, stories from other people affected by Cystic Fibrosis, and other things relevant to CF.

💜 Today is World Cystic Fibrosis Day — a day to honor the CF community, recognize the progress that’s been made, and hig...
09/08/2025

💜 Today is World Cystic Fibrosis Day — a day to honor the CF community, recognize the progress that’s been made, and highlight the journey still ahead. From patients and caregivers to researchers and advocates, together we’re building awareness and hope.

Join us in spreading the word and supporting the CF community today and every day. 🌍✨

05/15/2025

Breaking News: A baby with a rare disorder made medical history by receiving the first custom gene-editing treatment. The technique used has the potential to help people with thousands of other uncommon genetic diseases. https://nyti.ms/3GYnxzK

🫁 Spot the Signs: Understanding Symptoms of Cystic Fibrosis 🧬Cystic fibrosis (CF) is a genetic disorder that primarily a...
05/09/2025

🫁 Spot the Signs: Understanding Symptoms of Cystic Fibrosis 🧬

Cystic fibrosis (CF) is a genetic disorder that primarily affects the lungs and digestive system. It causes the body to produce thick, sticky mucus that can clog airways and trap bacteria, leading to serious health problems.

Here are key symptoms to watch for:

🔹 Chronic coughing – Often with thick mucus that doesn’t go away
🔹 Frequent lung infections – Such as bronchitis or pneumonia
🔹 Wheezing or shortness of breath – Even during mild activities
🔹 Slow growth and weight gain – Despite eating well
🔹 Greasy, bulky stools or difficulty with bowel movements – Due to poor absorption of nutrients
🔹 Salty-tasting skin – Often noticed when kissing a child with CF
🔹 Nasal polyps or frequent sinus infections

CF symptoms can vary widely, especially between children and adults. Early diagnosis and treatment can greatly improve quality of life.

If you recognize these signs in yourself or someone else, talk to a healthcare provider. Awareness can save lives. 💜

💧 Have you ever noticed your fingers get pruney after a swim or a long bath?That’s called aquagenic wrinkling, and while...
05/07/2025

💧 Have you ever noticed your fingers get pruney after a swim or a long bath?
That’s called aquagenic wrinkling, and while it happens to everyone, people with cystic fibrosis (CF) often experience it much faster—and more intensely.

In CF, the salt imbalance in the skin causes this reaction to happen within minutes, sometimes causing pain or swelling. It’s a small but telling sign of how CF affects the body in unexpected ways.

💧 Aquagenic wrinkling + CF: What can you do?
That “pruney” skin after water exposure happens faster—and sometimes painfully—for people with cystic fibrosis. Here’s how to care for it:
✔️ Keep water exposure short
✔️ Use barrier creams before contact
✔️ Avoid hot water
✔️ Moisturize right after
✔️ Wear gloves for chores
✔️ Talk to your CF team if it’s severe

It’s a small symptom, but it can be a big discomfort. Awareness + care = support. 💙

By understanding these everyday symptoms, we help bring more visibility to an invisible illness.

🌟Living Well with Cystic Fibrosis: Nutrition Tips🌟Did you know that people with Cystic Fibrosis (CF) need a very specifi...
05/06/2025

🌟Living Well with Cystic Fibrosis: Nutrition Tips🌟

Did you know that people with Cystic Fibrosis (CF) need a very specific kind of diet to stay healthy and strong? Because CF affects digestion and nutrient absorption, getting the right foods can make a big difference in energy levels, growth, and overall health.

🧈 High-Fat, High-Calorie Diet
People with CF burn more calories just to breathe and fight infections—so they often need 50–100% more calories than others! Foods rich in healthy fats like avocados, nuts, olive oil, whole-fat dairy, and fatty fish are essential.

🧂 Salt Replacement is Key
CF causes the body to lose more salt through sweat, which can lead to dehydration and imbalances. It’s important to add a little extra salt to meals and drink electrolyte-rich fluids, especially in hot weather or during exercise. Sports drinks or salty snacks can be helpful!

💊 Don’t Forget Enzymes & Vitamins
Since CF can prevent proper digestion, many people need to take pancreatic enzyme supplements with meals and snacks. Also, fat-soluble vitamins (A, D, E, and K) often need to be taken in special forms to be absorbed properly.

🥦 Balanced Nutrition Still Matters
While high calories and fats are important, so are lean proteins, fruits, vegetables, and whole grains. A varied, nutrient-rich diet helps keep the immune system strong and the body energized.

💪 Stay Active & Hydrated
Regular exercise supports lung function and digestion. And staying well-hydrated helps thin mucus and keep energy up.

📣 Every CF journey is unique
Every person with CF should always work closely with their CF care team and dietitian to tailor their nutrition plan to their specific needs!

Eating well with CF isn’t just about calories—it’s about fueling the fight and giving your body the tools to stay resilient and strong. 💚

🥞 Sample CF-Friendly Breakfast for Our 8-Year-Old Boy, Parker:
Here’s a delicious, high-energy breakfast idea that’s both kid-approved and CF-smart. Here's a rough estimate of the calorie count for what Parker would eat for breakfast most days:

🥞 Pancakes with Whole Milk and Butter (2 medium pancakes)
Pancake batter (made with whole milk & butter): ~200–250 kcal
Butter on top (1 tbsp): ~100 kcal
Sunflower butter (1 tbsp): ~100 kcal
Maple syrup (1 tbsp): ~50 kcal
Subtotal: ~450–500 kcal

🥓 Bacon or Sausage (2 slices or 2 links)
Bacon (2 slices): ~80–100 kcal
OR sausage (2 links): ~150–200 kcal
Subtotal: ~100–200 kcal (depending on choice)

🍌Banana (1 small): ~90 kcal

🥤 Smoothie (banana + sunflower butter + whole milk)
Banana (1 small): ~90 kcal
Sunflower butter (1 tbsp): ~100 kcal
Whole milk (1 cup): ~150 kcal
Subtotal: ~340 kcal

OR
🥛 Whole Milk (1 cup)
Whole milk alone: ~150 kcal

🧂 Extra Salt (small sprinkle)
Calories: 0 (but nutritionally important!)

🔢 Estimated Total Calories:
With smoothie: ~890 to 1,040 kcal
With just whole milk: ~700 to 850 kcal

Let’s Talk Enzyme Replacement Therapy (ERT) 🧬Cystic fibrosis (CF) affects the lungs and the digestive system (and more)—...
05/05/2025

Let’s Talk Enzyme Replacement Therapy (ERT) 🧬

Cystic fibrosis (CF) affects the lungs and the digestive system (and more)— making it tough for the body to absorb nutrients. That’s where Enzyme Replacement Therapy (ERT) comes in.

👩‍⚕️ What is ERT?
ERT involves taking pancreatic enzyme supplements that help break down fats, proteins, and carbs — so your body can actually absorb the nutrients from your food. (Parker takes 2 with meals and 1 with a snack, totaling around 10 per day.)

🍽️ These enzymes are usually taken as capsules with meals and snacks. They’re a vital part of daily care for many CF patients dealing with pancreatic insufficiency.

💪 Why it matters:
Without these enzymes, people with CF can suffer from malnutrition, poor growth, and gastrointestinal issues — even if they eat a balanced diet.

📌 Key benefits of ERT:
✅ Improved digestion
✅ Better nutrient absorption
✅ Enhanced growth in children
✅ Improved quality of life

🥴 Without enzymes, a CF patient's body can’t properly digest food. That means:
❌ Nutrients pass through unabsorbed
❌ They may feel bloated, gassy, or have stomach pain
❌ They might have frequent, greasy, or foul-smelling stools
❌ They risk malnutrition, weight loss, and vitamin deficiencies
❌ Growth and development (especially in kids) can be stunted

⚠️ Long-term enzyme skipping can lead to serious complications, including poor bone health, weakened immunity, and delayed puberty.

🧬 What Are CFTR Modulator Medicines? 🫁CFTR modulators are breakthrough treatments for cystic fibrosis (CF) that target t...
05/04/2025

🧬 What Are CFTR Modulator Medicines? 🫁

CFTR modulators are breakthrough treatments for cystic fibrosis (CF) that target the underlying cause of the disease—not just the symptoms.

People with CF have a faulty CFTR protein, caused by mutations in the CFTR gene. This protein is supposed to help move salt and water in and out of cells. When it doesn’t work properly, thick, sticky mucus builds up in the lungs and other organs.

💊 CFTR modulators help the protein work more effectively. Some types include:
🔹 Potentiators (like ivacaftor) – help open the protein channel.
🔹 Correctors (like lumacaftor, tezacaftor, elexacaftor) – help fix the protein’s shape so it reaches the cell surface.

Together, these medicines improve lung function, reduce infections, and enhance quality of life for many people with CF.

✨ They don’t cure CF, but they’re a huge step forward!

DAY 3 of CF AWARENESS MONTH 💜🌬️ CF & Airway Clearance: Breathing Easier, One Session at a Time 💪For those living with cy...
05/03/2025

DAY 3 of CF AWARENESS MONTH 💜
🌬️ CF & Airway Clearance: Breathing Easier, One Session at a Time 💪

For those living with cystic fibrosis, airway clearance is more than just a routine—it’s a lifesaving part of daily care. This therapy helps loosen and remove the thick, sticky mucus that builds up in the lungs, reducing infections and making it easier to breathe.

From chest physiotherapy to high-frequency vest therapy and breathing devices, there are many tools that support lung health. It's tough, it's time-consuming, but it's powerful. ❤️‍🩹

Parker uses the Vest..
💨 What Is "The Vest" in CF Treatment? 💨

The Vest is a type of airway clearance therapy used by people with cystic fibrosis to help loosen and clear thick mucus from the lungs. It's officially called a high-frequency chest wall oscillation (HFCWO) vest.

🔹 How It Works:
The vest is worn around the chest and connected to a machine.

When turned on, the machine rapidly inflates and deflates the vest.

This creates gentle but fast vibrations (oscillations) on the chest wall.

These vibrations shake the mucus loose from the lungs so it can be coughed out more easily.

🔹 Why It Matters:
For people with CF, thick mucus can trap bacteria and lead to serious lung infections. Using the vest regularly helps reduce these risks and improves breathing over time.

🔹 Quick Facts:
Usually used daily, often 2–4 times per day.

Each session lasts around 20–30 minutes.

Can be done at home, while watching TV, reading, or listening to music.

Day 2 of Cystic Fibrosis Awareness Month!! Another question we get asked often is how did Parker end up with CF?The Answ...
05/02/2025

Day 2 of Cystic Fibrosis Awareness Month!!

Another question we get asked often is how did Parker end up with CF?
The Answer: His dad and I both carry a mutated CFTR gene.

Cystic fibrosis (CF) is a genetic disorder caused by mutations in the CFTR gene. You inherit two copies—one from each parent. If both copies are faulty, the CFTR protein doesn’t work properly, leading to thick, sticky mucus that affects the lungs and digestive system.

👨‍👩‍👧 If someone inherits just one faulty gene, they're a carrier but won’t show symptoms. (A lot of people don't even know they are carriers until later in life. We had no idea until my second trimester.)

📊 CF is recessive—which means both parents must be carriers for a child to have CF. If they are, there’s:

25% chance the child has CF

50% chance the child is a carrier

25% chance neither

IT'S MAY!! 💜That means it's Cystic Fibrosis Awareness Month!💜Let's start with the basic question- What is CF?Cystic Fibr...
05/01/2025

IT'S MAY!! 💜
That means it's Cystic Fibrosis Awareness Month!💜

Let's start with the basic question- What is CF?
Cystic Fibrosis (CF) is a rare, genetic disease that causes thick, sticky mucus to build up in the respiratory and digestive systems. This makes it hard to breathe, fight infections, and absorb nutrients from food.

People with CF face daily treatments like airway clearance, enzyme therapy, and specialized nutrition—but they fight with strength and resilience every single day.

CF is NOT CONTAGIOUS, and it starts at birth due to a gene mutation passed down from both parents.

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Logan, WV

Telephone

+13049288473

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