#CFSpotlight - Twitter Hashtag

11 months ago

💙 Meet Baker, #CFSpotlight From surprise twins to a CF diagnosis at just 8 days old, Baker’s story is one of grit, joy, and family strength. With his twin sister by his side and two loving parents, this little athlete is living life to the fullest. “We thought our biggest surprise would be finding out we were spontaneously having twins until our son, Baker, was diagnosed and began treatment for CF at just 8 days old! Not knowing we were carriers—we quickly began doom scrolling—until my football fanatic husband remembered the infamous #7 had a son with the same thing! We used Boomer, Cheryl, and Gunnar’s story to comfort us in the earliest days of doubt and worry. We went from grieving the expectations we had on our son’s life—to celebrating the opportunity to spread hope and joy in the CF community! Our Bulletproof Baker will begin Trikafta next month on his second birthday—but we have tried to live life as if he is already on this miracle drug, as no day is ever promised! This has led Baker to participate in all of the best things in life—including being a total sports fanatic already! As Baker’s mom is a head high school softball coach/assistant HS girls flag football coach, and dad is an assistant football coach—his twin sister and him had no choice but to embrace the jock life! Whether it’s playing catch with the pigskin, hitting the ball off the tee, putting off, hooping it up, hiking in the Montana mountains, or running around our small ranch trying to keep his livestock in line—Baker has been an athlete before he officially took his first steps! We are so thankful for BEF and all of the opportunities we have been blessed with because of them. The recent E60 episode featuring the Esiason family is a frequent rewatch in our home!” – Tylee McMaster (Baker’s Mom) #CysticFibrosis #BoomerEsiasonFoundation

cysticfibrosis's tweet photo. 💙 Meet Baker, #CFSpotlight

From surprise twins to a CF diagnosis at just 8 days old, Baker’s story is one of grit, joy, and family strength. With his twin sister by his side and two loving parents, this little athlete is living life to the fullest.

“We thought our biggest surprise would be finding out we were spontaneously having twins until our son, Baker, was diagnosed and began treatment for CF at just 8 days old! Not knowing we were carriers—we quickly began doom scrolling—until my football fanatic husband remembered the infamous #7 had a son with the same thing!

We used Boomer, Cheryl, and Gunnar’s story to comfort us in the earliest days of doubt and worry. We went from grieving the expectations we had on our son’s life—to celebrating the opportunity to spread hope and joy in the CF community! Our Bulletproof Baker will begin Trikafta next month on his second birthday—but we have tried to live life as if he is already on this miracle drug, as no day is ever promised!

This has led Baker to participate in all of the best things in life—including being a total sports fanatic already! As Baker’s mom is a head high school softball coach/assistant HS girls flag football coach, and dad is an assistant football coach—his twin sister and him had no choice but to embrace the jock life! Whether it’s playing catch with the pigskin, hitting the ball off the tee, putting off, hooping it up, hiking in the Montana mountains, or running around our small ranch trying to keep his livestock in line—Baker has been an athlete before he officially took his first steps!

We are so thankful for BEF and all of the opportunities we have been blessed with because of them. The recent E60 episode featuring the Esiason family is a frequent rewatch in our home!” – Tylee McMaster (Baker’s Mom)

#CysticFibrosis #BoomerEsiasonFoundation

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@cysticfibrosis

about 2 years ago

🌟 Today our #CFSpotlight shines on Josephine Clark, 15 years old! 🌟 Josephine was diagnosed with cystic fibrosis at just 10 days old after being born with a meconium ileus and undergoing surgery. Since birth, she has been a fighter, enduring numerous hospital stays. Knowing the importance of exercise for lung health, Josephine started playing sports at a young age, including soccer, basketball, and softball, and discovered her true passion for volleyball. Starting Trikafta in 2020 was a game-changer, allowing Josephine to grow strong and healthy. Now, she competes at an elite national level in volleyball and hopes to play in college. Josephine believes CF has shaped her into the strong, resilient young woman she is today. She dreams of studying sports management in college to help women from all backgrounds achieve their dreams in the sports industry. ~ Sara Clark (Josephine’s mom) Join us in celebrating Josephine's incredible journey! 💙

cysticfibrosis's tweet photo. 🌟 Today our #CFSpotlight shines on Josephine Clark, 15 years old! 🌟

Josephine was diagnosed with cystic fibrosis at just 10 days old after being born with a meconium ileus and undergoing surgery. Since birth, she has been a fighter, enduring numerous hospital stays. Knowing the importance of exercise for lung health, Josephine started playing sports at a young age, including soccer, basketball, and softball, and discovered her true passion for volleyball.

Starting Trikafta in 2020 was a game-changer, allowing Josephine to grow strong and healthy. Now, she competes at an elite national level in volleyball and hopes to play in college. Josephine believes CF has shaped her into the strong, resilient young woman she is today.

She dreams of studying sports management in college to help women from all backgrounds achieve their dreams in the sports industry.

~ Sara Clark (Josephine’s mom)
Join us in celebrating Josephine's incredible journey! 💙

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@cysticfibrosis

about 2 years ago

🌟 Kicking off this year's #CFSpotlight series featuring Liliana! 🌟 "Liliana, 13 years old, was diagnosed with cystic fibrosis at birth and faced many challenges in her early years. Currently on Trikafta, she is thriving and living her best life." To read more about Liliana's story click here: https://t.co/BnaD2dgOr8

cysticfibrosis's tweet photo. 🌟 Kicking off this year's #CFSpotlight series featuring Liliana! 🌟

"Liliana, 13 years old, was diagnosed with cystic fibrosis at birth and faced many challenges in her early years. Currently on Trikafta, she is thriving and living her best life."

To read more about Liliana's story click here: https://t.co/BnaD2dgOr8

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@cysticfibrosis

over 2 years ago

In today's #CFSpotlight we are excited to introduce & feature our four #BEFAmbassadors Emily, Ivan, Alyssa, and Mikey. Throughout the next year follow along with our ambassadors as they share their stories to help raise awareness about CF and actively advocate the mission of BEF

cysticfibrosis's tweet photo. In today's #CFSpotlight we are excited to introduce & feature our four #BEFAmbassadors Emily, Ivan, Alyssa, and Mikey. Throughout the next year follow along with our ambassadors as they share their stories to help raise awareness about CF and actively advocate the mission of BEF https://t.co/SFmBrwXzK8

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@cysticfibrosis

almost 3 years ago

In today's #CFSpotlight, we shine light on the Nicole Kohr 🩵🌟 Head over to IG to learn all about Nicole's remarkable story! https://t.co/VjTiWksshH

cysticfibrosis's tweet photo. In today's #CFSpotlight, we shine light on the Nicole Kohr 🩵🌟

Head over to IG to learn all about Nicole's remarkable story! https://t.co/VjTiWksshH https://t.co/NLk2msGugq

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@cysticfibrosis

almost 3 years ago

In our most recent #CFSpotlight🔦 we shine light on Karen Romano from Kings Park, NY!!! To learn more about Karen's story visit: https://t.co/EyaVcM0dUn #FightCFwithBEF