Press release: 12th October 2016
Abigail Brundrett, 16 and Cassidy Vancil, 18 from Charlotte, NC, have choreographed and performed a dance video [to help her lifelong friends].
[It] highlights the struggle faced by people living with cystic fibrosis, a genetic disease that affects several of their close friends.
The teenagers are both keen dancers; Cassidy is 2016 Carolina’s Perfect Dancer Teen and Abigail holds the title of 2016 World Perfect Dancer Grand Champion.
Their dance is performed to the song ‘Breathe With Me’ by annaJo, a singer who has cystic fibrosis (CF). Breathe With Me is the campaign song for a CF awareness initiative, the Strawfie Challenge.
Cystic fibrosis is a life-shortening genetic condition – only half live to celebrate their 40th birthday. It causes the internal organs, especially the lungs and digestive system, to become clogged with thick sticky mucus, resulting in chronic infections and inflammation of the lungs.
The Strawfie Challenge campaign asks people to experience for themselves the feeling of having to fight for breath, by breathing through a narrow drinking straw with a pinched nose for 60 seconds, then posting a selfie (or Strawfie) of themselves performing this action, on social media using #Strawfie or #StrawfieChallenge. Participants are then encouraged to make a donation to the CF charity of their choice.
Abigail has known twins Alani and Aleeya Young and their older sister Adriana for many years. All three siblings have CF. Seeing them undertake their daily physiotherapy routine made a big impression on Abigail at the tender age of eight and she is passionate about raising awareness of the impact cystic fibrosis has on families.
Here in her own words Abigail shares her motivation for wanting to involve more people in the fight against CF:
“I was living in Ohio and new to cheerleading when I met the twins. Aleeya, Alani and I became fast friends, doing all the things six-year-olds do. They did the same activities that I did. Sometimes they got out of breath faster, or got tired quicker, but at that young age I never paid much attention. I never noticed anything wrong… that is until I visited them at home.
“I was eight-years-old when I first went to their house to play. I saw Alani, Aleeya, and their older sister Adriana, undertake their daily treatment for CF.”
“They wore vests that shook them hard. The noise those machines made! Loud and frightening, it was hard to watch the twins vibrate and shake. Their mom, Miss Heather, explained to me in simple terms that those vests broke up the mucus in their lungs and made it easier for Alani and Aleeya to breathe.
“As time went on, I learned about all the medicines, pills, and machines the girls needed to have a normal day. In the summer, I would visit them at the hospital when they went in for their “annual maintenance”. I always felt bad that my best friends were stuck inside the hospital room for three weeks instead of playing outside in the sunshine with me. I wanted to do something to help, but I didn’t know what I could do.
“My family moved to Charlotte, North Carolina in 2008 but I was reunited with Alani and Aleeya in 2013. I had not only excelled in cheer, but was becoming a Showstopper nationally ranked acrobatic dancer. It was at a national dance championship that I got a surprise visit. Alani and Aleeya had started dancing as well! How our lives seemed so alike. They cheered – I cheered. They danced – I danced. Yet our lives were actually so different. While they still spent much of the summer in the hospital, I spent summers on the beach.
“I wanted more than ever to do something to help. Finally, three years later I got my chance. Becoming 2016 World Perfect Dancer Grand Champion opened opportunities to spread awareness for CF. I was starting to go to events and meet people. I could finally do something. Printing stickers and bringing straws. I started encouraging people to do the Strawfie Challenge. I would talk about CF. I would share how important physical activity is for those with CF and how new medicines can help.
“It always amazes me how Alani and Aleeya, do everything they do. I am so proud they all cheered with me. They never give up. I want to dance in their honor. I want the world to see what I see. CF doesn’t hold Alani or Aleeya back. The twins are just like me.
“Through my online posts about the Strawfie campaign I also made a new friend who has CF. Emily Jo Bonnie (who also features in the video) lives in England. Although we are an ocean apart, my campaigning brought us together and we have become firm friends. t has reinforced to me how many people around the world are affected by cystic fibrosis.”
In fact 70,000 people around the world have cystic fibrosis. The thick, sticky mucus in their bodies often affects other organs such as the liver, as well as causing lung damage. Adults and teens often develop CF related diabetes.
Watch our Strawfie awareness video to find out a little more about CF and to see some of the people who have already taken the Strawfie Challenge: https://www.youtube.com/watch?v=EfRGmic37ik
###
