Beyond the diagnosis: fundraising to raise awareness of rare conditions 

But in 2024 she did something different and contacted Rett UK directly, hoping to run the 2025 TCS London Marathon for the charity. 

The 29-year-old has a personal connection to the charity as her niece (pictured above in the middle) was diagnosed with Rett syndrome last year.

Rett is a rare genetic disorder that affects the development of the brain and can cause mental and physical disability (NHS). It mainly affects females, and around one in 10,000 girls are born with it. However, it can go undetected until they reach their first birthday.

Jess’s niece, Summer, was diagnosed before she turned four and “that’s when it clicked”, says Jess.

“For the first four years of her life, Summer was given so many different diagnoses and none of them felt right.

“Now she has been diagnosed, my cousin and her partner have learnt so much more about her development, what to expect, and how to support her in the best way… they’re amazing parents.”

A child may not have all the symptoms of Rett syndrome, and their symptoms might change as they get older.

“Summer doesn’t walk or talk but she communicates through her smile and infectious laugh. She is a very charismatic little girl,” Jess says.

There is still a long way to go with research and Rett is difficult to diagnose because it is so rare, but Jess says she hopes her fundraising will help other families dealing with the condition, especially single parents who could be navigating it alone.

Rett UK is a fantastic support network for families. Jess’ cousin, Helle, has been to their meet-ups and talked to people who parent children of all ages with Rett syndrome.

“It was nice for her to speak to them about how the teenage years have been and how siblings have reacted to changes over the years,” says Jess.

The charity also awarded Summer’s siblings, Aaron, Caitlin, and Ruby, with special vouchers for being such great brothers and sisters. 

And you might even spot them along the marathon route, as they’ve been granted special leave from school to travel down from Kinross in Scotland to spur Jess on.

Jess started running in her teens and Marathon Day is the day before her 30th birthday, which is perfect timing as her pre-30 bucket list included three goals: travelling New Zealand, doing a bungee jump, and running the TCS London Marathon. Jess decided to try her luck on ticking the third off by contacting Rett UK after her bungee jump in New Zealand.

Jess has already surpassed her initial fundraising target of £2,000 and has now fundraised more than £3,000. With two fundraising events in her calendar, she may just double her target.

Here are her top three fundraising tips.

Your employer might offer match funding and match the money you raise pound-for-pound or donate a fixed amount to your cause. Jess’ colleagues have been generous and her employer, Tin Man Communications, donated £100 towards her target.

Even if your employer can’t contribute, it’s worth a conversation to see if you can host an event or bake sale in your workplace. Jess is also putting on a raffle for her colleagues.

Social media has helped Jess to keep everyone updated on her marathon journey.

“People’s generosity has been massive. Every time I post I get a donation, however big or small, it just works,” she says.

Jess adds it’s been wonderful hearing from people who support Summer.

“A lot of donations are from family, as I have a big family, and it means a lot to them, but people I don’t know have been donating, and the comments have been amazing.

“I ask Helle who they are and what they do for Summer, and to see how many people love her as much as we do is amazing.”

Branching out of your immediate circle can be good for a fundraising drive. Jess is holding a quiz night at one of her local pubs, with the entry fee going to Rett UK.

She says choosing a busy venue can be a good way to tap into a new audience, so it’s worth considering what’s on your doorstep.