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At KMK we focus on results, not just ideas. We work together with our clients to develop solutions that work in the real world.
Make smarter business decisions with our enterprise-level data enrichment solution tools and applications.
Best thinking and results to guide you
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Patient centricity has been a decades-long focus of our industry, but most pharma companies are still working to truly adapt to this shift. To help bridge the gap between patients and healthcare, we invited Kyle Bryant, a Rare Disease patient, to share his story with our KMK team in NJ last month. He talked about his journey with Friedreich’s Ataxia (FA) and left us with a lasting impression that all patients need is care—care that ensures their safety, care that connects them with their community, and care that keeps their hope alive.
Kyle’s Story
Waking up one day and feeling like you’ve suddenly been robbed of the ability to walk would be an unthinkable challenge that could drastically alter your life. For many, it’s a nightmare scenario – being unable to do something as simple but essential as taking steps can make dreams for normality seem impossible.
Kyle, a bright 17-year old sports lover, was suddenly thrown into an unfortunate reality of living with Friedreich’s Ataxia (FA). Little did he know this difficult diagnosis would mark the start of his journey towards understanding and acceptance for himself and those around him.
Friedreich’s Ataxia is an incredibly rare neurological disorder that affects muscle coordination, leaving those suffering from the condition with weakened mobility. Most individuals living with FA are still able to make sense of their surroundings and interact normally – while at present there isn’t a cure in sight, physical and speech therapies can help ease its effects over time. Approximately 1 out of every 50 thousand people may be affected by this affliction according to the National Institute for Neurological Disorders and Stroke – here’s what you need to know about it.
Coping with His Diagnosis
When Kyle was diagnosed with FA, it came as a life-changing realization. He quickly comprehended the harsh implications, that his mobility would be limited and death might come sooner than expected.
“I was only 17 years old! That’s the pinnacle of optimism. Your whole life is in front of you, and I found out that it was nothing but downhill from there on,” Kyle adds.
After facing huge lifestyle changes, Kyle was determined to thrive and not just survive. He pushed himself through school and found a job despite the fact that his ability to play sports he loved had been slipping away from him. Ultimately though, when it came down to completely giving up on leading an active life – that’s something Kyle wasn’t ready for.
“That’s enough of losing all these sports and activities that mean so much to me; it’s a part of who I am,” Kyle said. It was at that precise moment that Kyle chose to fight this battle, and he found his strength in a recumbent tricycle.
His First Tri-Ride
Kyle was overwhelmed with uncertainty when it came time to take his tricycle out, but the brave adventurer powered on – seeking not only comfort and familiarity in doing so, but reclaiming a sense of freedom he hadn’t experienced in a long time. His determination paid off; Kyle fell head over wheels for cycling again!
“My first ride was seven miles—seven miles! I was so proud of myself; I had no idea I had that in me,” Kyle exclaims. His push was so strong that within four months of his very first ride, he went for a century ride and finished one hundred miles in a single day.
“I can’t even walk down the street, and I just rode 100 miles in a day,” Kyle thought that day.
After Kyle conquered his first century ride, he set out on an even bigger endeavor – a 2,500 mile journey over 59 days with his father. Their mission to make it from San Diego to Memphis for the National Ataxia Foundation proved more than just ambitious – their incredible success was an inspiration and sparked courage in those affected by FA.
“I was receiving emails and texts that my actions are helping other people in their lives to confront their challenges – it was really exciting, and we knew we had to keep going,” says Kyle.
Getting into Gear
Kyle was overwhelmed with uncertainty when it came time to take his tricycle out, but the brave adventurer powered on – seeking not only comfort and familiarity in doing so, but reclaiming a sense of freedom he hadn’t experienced in a long time. His determination paid off; Kyle fell head over wheels for cycling again!
“My first ride was seven miles—seven miles! I was so proud of myself; I had no idea I had that in me,” Kyle exclaims. His push was so strong that within four months of his very first ride, he went for a century ride and finished one hundred miles in a single day.
“I can’t even walk down the street, and I just rode 100 miles in a day,” Kyle thought that day.
After Kyle conquered his first century ride, he set out on an even bigger endeavor – a 2,500 mile journey over 59 days with his father. Their mission to make it from San Diego to Memphis for the National Ataxia Foundation proved more than just ambitious – their incredible success was an inspiration and sparked courage in those affected by FA.
“I was receiving emails and texts that my actions are helping other people in their lives to confront their challenges – it was really exciting, and we knew we had to keep going,” says Kyle.
In 2007, driven by his love for the FA community, Kyle launched rideATAXIA – a national campaign of bike rides to bring attention and money towards Friedreich’s Ataxia Research Alliance (FARA). Then in 2010 he upped the ante when he entered himself into Race Across America with an all-star team called FARA. In just 8 days and 8 hours they crossed that finish line.
“During the race lots of people from FA community came out to meet us along the way, they drove for hours just to see us for like five minutes – that’s what pushed us to finish this race. This was a huge personal accomplishment, but even more, it was an accomplishment for FA community.” Kyle states.
Kyle’s Take on Patient Care
During his presentation, Kyle emphasized the importance of developing meaningful connections with those living with rare diseases. He highlighted how understanding their mindset can facilitate compassionate and effective care delivery.
Today’s patients have high expectations for their healthcare experiences, and rightly so. To ensure we meet these demands, it’s essential to get a clear understanding of the patient journey. This can help build relationships that are beneficial both now and in the future – giving them access to even better care.
At KMK, we offer comprehensive research solutions to unlock critical insights into patient behavior and preferences. Our unique approach combines primary data with secondary sources to give you a 360-degree view of the market – arming your team with the resources needed for success in any disease area. With us, you can understand what patients need from an innovative perspective — allowing swift action on unmet needs that will make all the difference!
Learn more about Kyle’s journey at kyleabryant.com
Looking for support along your commercialization journey? We'll help you make sense of your data.