Following the launch of applications for our 2018 peer mentoring programme, we would like to share the story of one graduate, Wendy Horrobin, to show what patient groups can achieve on the scheme.
Wendy’s 9 year-old son was born with Norrie disease. Norrie disease causes blindness from birth and hearing loss. It can also cause cognitive impairment, autism and mobility issues. Until 2015 there was no dedicated UK charity to support the Norrie community, and there was very little information available to families and to visual and hearing impairment specialists.
In December 2015, Wendy and two other Norrie families met for the first time. They knew they wanted to work together to support the Norrie community, but they had no idea how to reach their goals.
Wendy applied to Findacure’s peer mentoring scheme and was matched to Kamlesh Sheth, a consultant to the pharmaceutical industry, in September 2016 for a year. The pair set their goals for the scheme and began working towards them straight away. In January 2017 the Norrie Disease Foundation was registered as an official charity and established a Medical Advisory Board (MAB). This included medical professionals from every aspect of Norrie disease. The MAB had its first meeting in April 2017 and contributed to the content of the charity’s website, which was also launched in April. This has helped to ensure the website is a credible source of medical information for families, specialists, schools and others.
“I would like to say a massive thank you to Findacure for making this opportunity possible and to Kamlesh for his support. Without question, if it hadn’t been for this programme and Kamlesh, we wouldn’t be where we are today.”
In May 2017 the charity had its official launch at UCL GOSH. Medical professionals had estimated in 2015 that there were 6-12 Norrie families in the UK, so it was amazing to see 20 families attend the launch. Most families had never met another person facing Norrie disease and it was an incredibly important opportunity for the families to share experiences and stories.
The Norrie Disease Foundation also started its own mentoring scheme for families and launched a PhD studentship at UCL GOSH in October, funded by New Life and Sparks. The PhD student will be researching the hearing loss associated with Norrie disease.
The Foundation are now planning their third Norrie community meet-up and a weekend away for over 30 families. Wendy was incredibly grateful to Kamlesh for his support throughout the year and truly believes they wouldn’t have achieved so much without him and the Findacure mentoring scheme.
Findacure would like to congratulate Wendy on such a productive year, and say a huge thank you to Kamlesh for volunteering as a mentor on the programme.
We are searching for both mentees and mentors to join our 2018 peer mentoring programme. If your patient group needs guidance in its development, or if you have advice that would help a patient group to progress, do check out the scheme and apply today!