In this episode, Jeannette talks to Jo Balfour, managing director of The Cambridge Rare Disease Network (CRDN). She explains how she went from being a teacher to setting up and running a charity that provides support for the thousands of people with, often untreatable, rare diseases. She and Jeannette cover a wide range of subjects. They discuss how Jo learned to push herself well beyond her comfort zone to grow her skill set and achieve more within her work life.
They talk about, why rare diseases impact far more people than we realise. They discuss the work CRDN, HealX and others do to help people impacted by rare diseases to get their voices heard. An approach that is proving to be highly effective. One that is leading to change. Including better facilities for the disabled, faster diagnosis, more targeted research, new drug, and treatment options. All of this is achieved through rare disease communities that are made up of people who support each other.
KEY TAKEAWAYS
- There are around 8,000 rare diseases. Only 5% can be effectively treated.
- With rare diseases, data is powerful. If you think something is not quite right health or development-wise, keep a diary of issues.
- Find your tribe. Seek out others in a similar situation. They will provide highly targeted guidance and support.
- Get involved, and share. Charities need the experience and voices of the people they are there to help.
- Eighty percent of rare diseases are genetic, so genome sequencing is proving to be an important diagnostic tool.
- When running a charity that helps people it is vital to listen to those you are trying to help.
- When working with large groups of people with quite different needs, find the common threads, the core challenges.
- When you address and find effective solutions for the core challenges you help everyone.
- Don´t be afraid to take risks and apply for jobs you are not 100% ready for. Learn on the job.
- Work collaboratively. Recognise and welcome other people´s skills and experience.
- If you have a passion that drives you, everything will eventually fall into place.
- Cash donations and fundraising are great. But giving your time and sharing your skills is also a powerful way to help a charity.
- Big problems get solved step by step. Take that first step. Start with the basics.
BEST MOMENTS
‘I can´t believe I was that brave person who thought I was really ready for those jobs. ´
‘If you have a passion, the passion will drive your desire to learn.’
‘Just take a risk, learn on the job. You can almost create a role for yourself.’
‘Find your community. You are not alone. There are lots of people out there in the same boat as you.’
If you love what they do, you can support the Cambridge Rare Disease Network and their work through their Just Giving page https://www.justgiving.com/cambridge-rdn or directly via PayPal giving paypal.com/gb/fundraiser/charity/3232065
See how you can support CRDN here https://www.camraredisease.org/fundraising/
Sign up to support CRDN here – https://www.easyfundraising.org.uk/invite/HDFHN1/
Through easyfundraising you can raise FREE donations for CRDN every time you shop online with over 6,000 retailers. John Lewis, Argos, Tui, Uswitch, eBay and many more are waiting to give a free donation. Or use Amazon Smile (it’s Amazon as you know it but automatically makes a 0.5% donation in your purchases.Sign up to choose Cambridge Rare Disease Network here https://smile.amazon.co.uk/ch/1166365-0 and make your shopping mean twice as much
This is the perfect time to get focused on what YOU want to really achieve in your business, career, and life. It’s never too late to be BRAVE and BOLD and unlock your inner BRILLIANCE. If you’d like to join Jeannette’s FREE Business Impact Seminar just DM Jeannette at [email protected] or sign up via Jeannette’s linktree https://linktr.ee/JLinfoot
VALUABLE RESOURCES
Brave, Bold, Brilliant podcast series - https://podcasts.apple.com/gb/podcast/brave-bold-brilliant-podcast/id1524278970
EPISODE RESOURCES
LinkedIn: https://uk.linkedin.com/in/balfourjo
Cambridge Rare Disease Network (CRDN) website: https://www.camraredisease.org/about-crdn/
Healx website: https://healx.io/
Shop via Amazon Smile: https://smile.amazon.co.uk/charity?orig=%2F
ABOUT THE GUEST
Jo Balfour is a founding member of CRDN and Managing Director. She directs and controls the charity’s operations and to gives strategic guidance and direction to the board. Read Jo’s background here in the Womanthology Magazine.
Jo leads the creative and operational development of CRDN’s unique and innovative events programme to raise awareness about rare disease and promote cross-sector collaboration. She is the founder of the charity’s regional rare disease community group, Unique Feet, and oversees all other aspects of the charity’s work.
From a background in Special Educational Needs Management and as an advisor for Looked After Children in schools, Jo’s 25 year career in education has been one which offered support and challenge to schools to provide the best care for young people living in exceptional circumstances to enable them to achieve aspirational goals in all aspects of their lives. She has continued this ethos of support and challenge into her work in rare diseases, aspiring to a world where all those affected by rare diseases receive exceptional care, treatment and support.
ABOUT THE HOST
Jeannette Linfoot is a highly regarded senior executive, property investor, board advisor, and business mentor with over 25 years of global professional business experience across the travel, leisure, hospitality, and property sectors. Having bought, ran, and sold businesses all over the world, Jeannette now has a portfolio of her own businesses and also advises and mentors other business leaders to drive forward their strategies as well as their own personal development.
Jeannette is a down-to-earth leader, a passionate champion for diversity & inclusion, and a huge advocate of nurturing talent so every person can unleash their full potential and live their dreams.
CONTACT THE HOST
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https://www.jeannettelinfootassociates.com/
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Email - [email protected]
Podcast Description
Jeannette Linfoot talks to incredible people about their experiences of being Brave, Bold & Brilliant, which have allowed them to unleash their full potential in business, their careers, and life in general. From the boardroom tables of ‘big’ international businesses to the dining room tables of entrepreneurial start-ups, how to overcome challenges, embrace opportunities and take risks, whilst staying ‘true’ to yourself is the order of the day.
Travel, Bold, Brilliant, business, growth, scale, marketing, investment, investing, entrepreneurship, coach, consultant, mindset, six figures, seven figures, travel, industry, ROI, B2B, inspirational: https://linktr.ee/JLinfoot
