When Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays, there was no UK organisation for her to turn to for support, and very little information available.
Determined to support the Norrie community herself, Wendy applied to Beacon’s patient group mentoring programme and was matched to Kamlesh, a consultant to the pharmaceutical industry. Within seven months, the Norrie Disease Foundation had registered as an official charity and launched a new website to provide credible information to families, specialists, schools and the general public. They have also started their own mentoring scheme for families, launched a PhD studentship at UCL GOSH, and continue to arrange community meet-ups.
Of all their impressive achievements, arguably their greatest success is the strong, supportive community that has been created. After being told by medical professionals that there were only 6 Norrie families in the UK; the Norrie Disease Foundation is now in touch with over 30.
“I would like to say a massive thank you to Beacon 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.”