Greater Peoria Metro Area, IL

Working with the community... for a healthier community.

Serving People With Cystic Fibrosis

  July 01, 2020


Submitted by Rachel Rockhold, The Legacy Foundation

The Colton Underwood Legacy Foundation is a non-profit organization committed to advancing the quality of life for people living with cystic fibrosis (CF). The charity was founded in honor of Harper Hawksworth, a Washington resident, who was diagnosed at birth with CF. Her cousin, Colton Underwood, former NFL player, and star of ABC’s The Bachelor, saw a gap in service to individuals living with CF and chose to utilize his growing platform to bring awareness to CF and serve the warriors battling the disease. Research has made significant progress in pharmaceuticals helping to extend the life expectancy of people living with CF by decades compared to the previous generation. The Legacy Foundation focuses on making the most of that longer life by helping to remove some of the obstacles that CF presents and promoting and inspiring healthy habits to support physical and mental wellbeing.

The Legacy Foundation started as a local charity. Colton established football camps to encourage youth fitness and raise funds to support the local Children’s Hospital CF clinic. However, with Colton’s professional visibility and social platforms soaring, so did the opportunities for the Legacy Foundation. In 2018, Colton partnered with International Biophysics, the maker of the AffloVest®, a portable airway clearance treatment, to establish the Legacy Project. Through the Legacy Project, Colton takes an AffloVest® (valued at over $15,000) to one person with cystic fibrosis in each state. Among other issues, CF causes mucus build-up in the lungs which can lead to life-threatening infections. Mobile airway clearance is required of CF patients to loosen the mucus to be coughed up and out of the lungs. Traditional treatment vests are heavy, loud machines that use tubes, and require an electrical outlet. The AffloVest® is light, quiet, and battery operated allowing the user to be mobile—a game changing feature that gives back up to 2 hours of time each day to play outside, run errands, and live life while getting treatment.

Thanks to its national sponsors—AffloVest®, the Joyce Family Foundation, and American Airlines—the Legacy Project has awarded 24 vests to people in 18 states including two individuals in Illinois. We have received nearly 500 nominations and applications from across the states. A selection committee reviews each nomination considering financial need, potential impact of the vest on quality of life, and compelling nature of the application and forwards their recommendation to Colton who makes the final decision. In two states, siblings have been awarded AffloVests and additional donors have allowed multiple recipients in four states.

In 2018, the Stringer family of Edelstein was surprised to learn that Lillian, age 12, was selected as the Illinois Legacy Project recipient. Lillian’s family and friends submitted dozens of nominations providing a comprehensive understanding of this family’s loving commitment to their community and dire need for the AffloVest®. Local State Farm agents Jodi Brown, Roger Hickman, Corey North, and Jamsetta Porter sponsored the local initiative and joined Colton in surprising the family during a trip to the Children’s Hospital of Illinois.

In addition, in December 2019, AffloVest® hosted a holiday-based second chance giveaway to provide a vest to a nominee living in a state in which a recipient had already been awarded. That recipient was Jovi, age 13, from Somonauk, Illinois.

Prior to the pandemic, the Legacy Project included a visit from Colton and the Legacy Project sponsors combined with a special experience to celebrate the recipients. We’ve been lucky enough to celebrate at college stadiums, professional basketball games, Disney World and other events tailored to honor CF warriors and bring awareness to the disease. Since the pandemic, we have continued to get this life-changing equipment to people across the states, but in a safer way. AffloVest® ships the units to the recipients and we host Zoom meetings to welcome them to the Legacy family and ensure they know how to properly use the vest.

While the Legacy Project has been the flagship initiative for the Legacy Foundation, we have other programs to inspire wellness through a focus on fitness, nutrition, mental health, treatment compliance, clinic relationships, community outreach, and joy. Through social media channels, we highlight CF warriors who are living their dreams, pursuing unique and challenging careers, and sharing their messages of optimism and strength.

Each Wednesday, our social platforms highlight a CF Warrior. These short stories of perseverance and personal accomplishment help our followers understand the battle that those with CF fight daily. Cystic fibrosis is often referred to as an invisible disease. At first glance, you are not likely to recognize CF. The battle is internal—affecting one’s lungs and digestive systems. To provide more in-depth understanding, we produce longer, video stories called My Inspiring Life featuring individuals who share their obstacles, motivations, and successes.
Last summer, we hosted a Lemonade for Legacy campaign which blended local lemonade stands with online fundraising to support the purchase of toys, crafts, and other practical items for people with cystic fibrosis during hospital stays. We were able to fulfil the wish lists of 10 CF clinics across the U.S. including the Children’s Hospital of Illinois.

The Legacy Foundation is launching a new campaign starting July 13th called Inspiring Fitness. This six-week activity challenge and fundraiser is designed for all, but will include motivation and education from within the CF community. Prizes are awarded for a variety of challenges across the six weeks with special content and incentives for teams, adults 21 and older, people living with CF, students, teachers, and families.

Inspiring Fitness was created not only to support a safe way to raise funds for the Legacy Foundation’s projects, but for people to establish a safe and healthy fitness routine in a fun way. The pandemic has, for some, contributed to feelings of isolation and depression. Through Inspiring Fitness, we hope to bring a sense of community and support while increasing physical activity to restore health and hope. Colton—along with Legacy Project recipients, health and fitness professionals, and other supporters—will motivate, educate, and challenge registrants throughout the campaign.

Despite having a national presence, the Legacy Foundation remains headquartered in Washington. We are grateful for the continued local support through fundraisers, community involvement, and apparel purchases that enable us to continue our work. We’re especially grateful to the CF team at the Children’s Hospital of Illinois for their expertise and collaboration for educational content and creative ideas to support families affected by cystic fibrosis.

To learn more about the Colton Underwood Legacy Foundation, including the Legacy Project and Inspiring Fitness, visit www.ColtonsLegacy.org or follow us on Instagram @coltonslegacy or Facebook at ColtonsLegacyFoundation. Back to Top

July 01, 2020
Categories:  Feature

 

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