Continuing in our CEO Series, Becky Jenner, CEO of Rett UK, shares her very personal journey that saw her give up a career in retail to co-found the charity Extratime and eventually become CEO of Rett UK

CEO Series: meeting the beating hearts behind the RARE brands

1.

What made you want to move into the wide world of rare disease, and then specifically Rett UK and what did that journey look like?

My career spans two halves really. Firstly in retail management starting as a Saturday assistant for Tesco, moving up to be an assistant manager with them and then with a company now called M & Co, initially as a store manager and then as an area manager, a post I returned to part time after having my first child Rosie … until D-day! D-day or diagnosis day was the day I found out my beautiful, smiley and happy fourteen-month-old had Rett syndrome, a rare, complex neurological disorder which mainly affects females. After a period of near-normal development up to the age of around one year to 18 months, the child regresses, in Rosie’s case overnight, losing key skills including the ability to walk, talk and have any purposeful hand use. With time, many medical comorbidities emerge including epilepsy, scoliosis, dystonia, gut and bowel dysfunction and severe breathing problems. To say life took a turn at that point is probably an understatement.

I resigned that day … I still remember saying hysterically to my boss at the time, ‘I will still be changing nappies when she is 30!’ Sounds ridiculous now! I spent the next few years concentrating on her, finding out how I could help her achieve the best she could and trying to find a way forward. I became a trustee of Rett UK, a post I held for 7 years, had two more children, did a business degree part time, then at the point when I wanted to return to work and found there was not any childcare available that would meet her needs (by now very complex) and that my two boys could go to too, I started a charity with a mum in a similar situation; Extratime has just celebrated its 15th year of providing inclusive after-school and holiday activities for children and young people aged 5-25 years.

When the vacancy of CEO at Rett UK came up, it was a natural step for me to combine my business, charity and personal experience … especially into something that I have such a personal investment in. That was in 2014, after 12 years at Extratime.

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

The biggest challenges for us, like any small charity, is funding; finding new sources, making it go further but seeing demand for our services increase as cuts to statutory services that our families rely on continue to bite and cause them stress and hardship. We have worked hard to build alliances and partnerships where we can as we see the greatest opportunities here to ensure our families get the best we can offer them. We are a small community and we need to join with others to have a bigger voice and more influence about the things that matter to our families.

3.

What is your proudest moment in your career thus far?

I think that has to be winning Voluntary Sector Champion for Brighton and Hove in 2013, voted for by parents in the city and other professionals. It was fantastic to know how much people valued Extratime and what I had achieved with the team there.  

4.

What and who are your personal and professional inspirations and why?

​Rosie is my inspiration, my motivation and my drive every day to improve things for her and others affected by this devastating disorder. What she has to cope with on a daily basis is unimaginable for most people but she has an incredible zest for life, a wicked sense of humour and is the heart of our family. If she can keep going with what she has to deal with – anything I do is a walk in the park by comparison.

5.

What advice would you give someone considering working in the rare disease space?

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

I think things are improving with the combined efforts of the rare disease community but we need to keep the pressure on. Who knows with Brexit how that will affect the European playing field? A lot of research is done in Europe involving UK researchers and vice versa. How will those programmes be managed, funded? Will we lose some good people – probably! And at a time when so many advances are being made with gene therapies in particular, this is not great. The government nationally needs to ensure that this vital research is not compromised and also take a long term view that investment in rare diseases may be expensive initially but the longer term payback of getting the right treatment and therapies for this community is greater. Locally, our community is suffering because of the financial austerity which has decimated care and support services especially respite. Families crumble without regular breaks.

7.

What would you say are some of the biggest motivators for your employees?

Without doubt it is our families, their lives, their stories – our staff are moved every day by the challenges they face and they genuinely want to help make a difference. When they receive a thank-you card from someone, and they get a lot, they are so touched that they found the time to write it!

8.

What are the toughest parts of being a CEO, and conversely what are the most rewarding?

​The toughest part for me is dealing with the death of someone with Rett syndrome. I have been involved with Rett UK for over 22 years as a trustee, a family member and now CEO – many of my friend’s daughters have already passed. Of 7 girls that Rosie was at school with who had Rett syndrome only two are still alive. It is also hard for me to switch off as so much support and fundraising is now done on social media. The expectation of an instant response, especially outside of ‘normal’ work hours, is a real challenge for a small team working nationally so invariably that falls to me. The most rewarding is getting out of the office to meet the families at our events and seeing how much they value what we do. The feedback we get is fantastic!

9.

What would be your one wish for Rett UK for the year ahead?

That they run for government, sort Brexit out and put rare diseases at the heart of any plan.

10.

If you weren’t CEO of Rett UK, what was Plan B?  What did your 10-year-old self want to do as a job?

Plan B is to get a piece of land, grow beautifully scented British flowers to sell to anyone who appreciates them! My ten-year-old self wanted to do something that involved working outside but the only thing the ‘career advisor’ at the time could suggest was working for parks and gardens! My youngest son, now 18, has just completed the most amazing BTEC course in Adventure Sports – now he can go anywhere in the world teaching sailing, kayaking, mountain bike leading, climbing! How I would have loved to do that!