This week’s blog has been written by our guest Sue Routledge from the patient group Pitt Hopkins Syndrome UK. Sue was one of the first participants in our 2015-16 peer mentoring programme, and in this post she shares her mentoring story.

I was thrilled when I heard about the mentorship scheme and was keen to apply. Findacure put forward wonderful ideas and each have been extremely helpful. All the workshops have been very relevant to our group’s needs and I was certain the mentorship scheme would be a great help (which indeed it was)!

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We were invited to network with possible mentors and get an idea if we were suited. My original aim had been to focus on Pitt Hopkins UK becoming a charity and be better able to raise awareness of the syndrome but first we needed an improved website. My mentor paved the way for me. She explained how the website needed to be accessible for all levels of reading ability. Many people are in shock when they have a diagnosis or their child is being tested for something like Pitt Hopkins Syndrome (PTHS) and therefore it’s harder to take in information. As PTHS is ultra-rare there is not a website or something written in each language of the world. Many people have English as a second language or some only know basic English, so it’s important for the website to be easily navigated and simply set out for someone with limited English. I know this well from living in the Netherlands and often having to search a Dutch website. It’s not always easy to find the information you need. My mentor also helped me set up Google analytics for the website and a basic leaflet for PTHS and make a start on other projects. She showed me that raising general awareness of an ultra-rare syndrome is pointless. It is much better to concentrate on the people that might come in contact with our children like pediatricians, doctors, therapists, etc. Another project we talked about and began working on was working towards guidelines for PTHS.

I tend to be someone that deals with short term urgent matters and turn to a new task as it comes in which leads to the long term important things not always getting done. When you have a mentor you don’t allow that to happen. We rang or skyped regularly as we did so with Flóra from Findacure every 3 months.

Almost a year later with the website much improved, the trustees have managed to get Pitt Hopkins UK registered as a charity, we are still working on raising awareness and we will be working with other countries in helping with the guidelines. There is still much to do but we have made a good start. I really do not think we would have achieved this without the peer mentoring scheme.

If you are inspired by Sue’s story and want to become a mentor or a mentee, sign up to our 2016-17 mentoring programme. You can find out more and download an application form here.