This September, best friends Becca Tapsell and Jamie Longley are taking on a big challenge: walking 100 miles each in 30 days to raise money and awareness for Alport UK.
Becca’s story
For Becca, the challenge is deeply personal.
Becca is 19 and lives with Autosomal Recessive Alport Syndrome (ARAS). She was diagnosed around 10 years ago, after a long journey to understand what was happening with her health.
Alport affects her hearing and her eyesight, as well as her kidneys. She wears hearing aids and also relies on lipreading.
“I love my hearing aids, but they can get annoying sometimes,” she says.
Over the years, Becca has also experienced how little-known Alport Syndrome can be.
She has attended hospital appointments where healthcare professionals did not know what Alport was or how it could affect her. She even keeps a printed information sheet about Alport in her bedroom, ready to take with her when she goes to hospital.
For Becca, raising awareness is therefore just as important as raising money.
The right time
Becca first heard about Alport UK around three years ago, when a doctor gave her details of Alport UK’s website.
She had wanted to fundraise for the Alport community for some time, but with other things happening in her life, the timing never felt right. Last month, that changed.
“I said to Jamie, ‘I think it’s the right time to do it now.’”
Jamie immediately wanted to join her. Together, they came up with 100 Miles for Alport.
Their goal is simple: throughout September, they will each walk 100 miles. Two friends. 200 miles. 30 days. One cause: raising awareness of Alport Syndrome and supporting the Alport community.
The challenge comes during an exciting time for Becca. In September, she will also start university at Edge Hill University, where she will study Child and Adolescent Mental Health and Wellbeing.
“Becca is my rock”
Jamie, 20, has known Becca since 2022.
Her connection to Alport is through their friendship. Over the past few years, she has seen first-hand some of the impact the condition can have.
She has joined Becca at many of her hospital appointments and has worked to understand more about Alport and how she can support her.
“Becca is my absolute rock,” Jamie says. “Her family has taken me in as one of their own.”
Jamie is also a mum to a two-and-a-half-year-old son. She says the friendship and support she has received from Becca and her family mean a huge amount to her. Now she wants to give something back.
Jamie has even told Becca that, if Becca needs a kidney transplant in the future, she would like to find out whether she could be considered as a potential donor.
For now, they are taking things one mile at a time.
More than a fundraising challenge
During our first conversation with Becca and Jamie, the challenge also led to an important discussion about Becca’s wider family.
Becca has Autosomal Recessive Alport Syndrome. This means that understanding the genetics within her family is important.
Although Becca was diagnosed around a decade ago, genetic testing was not taken forward across her wider family. Her younger siblings, aged 17 and 14, have not been diagnosed with Alport.
The conversation has encouraged Becca to find out more about family testing and what her diagnosis could mean for other members of her family. This matters because early diagnosis can make a real difference.
Finding Alport early can allow people to receive the right monitoring and, where appropriate, treatment to help protect their kidneys for longer.
It is one of the reasons Alport UK works to improve awareness of Alport Syndrome among families and healthcare professionals.
And it has now become part of Becca and Jamie’s mission too.
Follow their 200-mile journey
Throughout September, Becca and Jamie will share their progress as they work towards their combined 200 miles. But they want to do more than count the miles.
Along the way, they will share Becca’s experiences and help people learn more about Alport Syndrome – from hearing and kidney health to genetics, family testing and the realities of living with a rare condition.
For Jamie, it is also an opportunity to keep learning.
“I’d never heard of Alport until I met Becca,” Jaime says. “It took me a while to understand what it was, let alone how it affects her.”
“I think it’s important for more people to understand it, as well as for me to understand more about what I can do to help and support Becca.”
Their original fundraising target is £1000, with all money raised supporting the work of Alport UK.
For Becca, a fundraising idea she had been thinking about for years is finally happening. And she won’t be walking those 100 miles alone.
Please follow Alport UK’s Instagram and Facebook account to follow Becca and Jamie’s challenge in September!
