CYSTIC FIBROSIS PATIENTS VOTE FOR ALTERNATIVES TO TRADITIONAL TREATMENT
CysticLife partners with researchers at Mayo Clinic to study if exercise can replace therapy 1x per day
Phoenix, AZ: Fed up with being tethered to a chest wall oscillation vest and inhaler three times a day, every day of their life to keep their lungs clear, cystic fibrosis (CF) patients are asking questions and taking matters into their own hands. They want to know if good, old-fashioned exercise can replace one traditional airway clearance technique a day and “unleash” them from their vests and nebulizers and instead allow them to run, bike, Zumba, and so much more. The community has partnered with researchers at Mayo Clinic to conduct the world’s largest CF exercise study. The community is now crowdfunding the research on Althea Health’s Social Funds platform at unleashus.org, a specialized platform built for rare disease communities to reach their social networks.
Watch Ronnie Sharpe demonstrate one minute of his traditional therapy routine:
https://www.facebook.com/81391099705/videos/vb.81391099705/10153868551124706/?type=2&theater
Cystic fibrosis is a rare and life-threatening, genetic disease that primarily affects the lungs and digestive system. The body produces mucus so thick that the lungs cannot effectively clear it, leading to infections and progressive loss of function. A number of members of the online community CysticLife.org have made dramatic come backs after major health setbacks to their lung function through exercise. But they need to know if exercise can be used as a long-term solution and doctors also need to know if it is a safe and proven alternative to recommend to their patients.
The research question emerged from a poll CysticLife conducted in late 2014 that showed members were most interested in ways to reduce the treatment burden to improve their quality of life. Exercise topped the list as a potentially viable alternative. “Sadly, no one wants to fund this kind of research,” says CysticLife Founder Ronnie Sharpe, “there is no financial incentive for companies to research this topic, so cystic fibrosis patients are on their own.”
CysticLife enlisted the help of researchers and clinician from around the country, including Stanford and John Hopkins, (https://cysticlife.org/researchpolling.php) and identified researches at the Mayo Clinic who could conduct the study. The last step is to raise the $250,000 required to run the study, for which the community is well on its way.
This first research study is part of a larger CysticLife initiative to ensure the patient voice is heard in the research community. CysticLife’s research priorities are set by their community of patients and their families. Based on their input, the CysticLife Research Advisory Board (link?) will focus on alternative therapies and nutrition options that can reduce treatment burden and improve quality of life, especially alternatives that are currently not being studied but if understood could improve patient care today.
CysticLife, with the help of its technology partner Althea Health, is also pioneering research in the home to make research participation more accessible to all CF patients. Through the use of devices and video conferencing, exercise research participants will participate in the research study from home removing the cost, time delay, and limitations that setting up multiple clinical sites imposes on the research process.
“Our mission is to empower patient communities,” says Manu Kodiyan, CEO of Althea Health. “We are excited to be partnering with CysticLife and researchers at the Mayo Clinic to enable patients to conduct research that matters to them and allow cystic fibrosis patients to contribute to this study from anywhere in the country.”
There are a number of amazing stories of patients who have made dramatic recoveries through exercise that their doctors did not consider possible taking part in the campaign. These include:
• Azer Russel – a precocious 11-year old who wants to play for the Texas Rangers. (https://unleashus.org/cysticlife/member_portrait.php?mid=1)
• Ashley Coleman – who’s lung capacity was so diminished she couldn’t even walk down the hospital corridor. (https://unleashus.org/cysticlife/member_portrait.php?mid=2)
• Matt Mitchell – a 5’8” high school quarterback, who trains like a professional athlete. He went undefeated this year and led his team to victory in the state championship. (https://unleashus.org/cysticlife/member_portrait.php?mid=3)
• Ronnie Sharpe – the founder of CysticLife.org, who came to a fork in the road of life in 2009. “I had a choice to make,” he says, “continue on my current path, watch my lung function plummet, and die; or make a drastic change to take my life back.” (https://unleashus.org/cysticlife/member_portrait.php?mid=5)
• Olivia Davis – a singer-songwriter with cystic fibrosis whose song “I choose life” captures the spirit of the CysticLife community and their community driven research campaign. (https://unleashus.org/cysticlife/member_portrait.php?mid=4)
About CysticLife.org: Launched in January 2010, CysticLife.org is the largest patient-led social network for the CF community with over 8600 members. This positive, uplifting site is the central location for people with CF, their family, and their friends to share tips, questions, ideas, experiences and encouragement. www.cysticlife.org
About Althea Health: Althea Health is a Silicon Valley startup dedicated to helping rare disease patient advocacy organizations raise funds and conduct research. The company’s vision is to accelerate new therapies and cures for rare diseases by leveraging digital technology and the social capital of the patients and families affected by these diseases. www.altheahealth.com
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