Your Stories

Your Stories

Fourth year medical student, Melihah Hassan who was paired with WSUK, took part in the Findacure Student Voices Essay Competition at the end of 2019. Her essay was short listed and awarded with a Highly Commended. Thank you to our WS member who was happy to speak with Melihah and provide her with the information for her essay. Thank you to Melihah for deciding to choose Wolfram Syndrome as her topic and raising awareness of the condition.

I have been given permission by Finnegan who was diagnosed last year to share his blog that he published with you all.

On Wednesday 19 February 2020 Amy and I got married. It was the happiest day of our lives. We had a small, intimate wedding at a country house in Rye and it was truly memorable. I feel so lucky to be married to the girl of my dreams.

We met each other on the WS Facebook group in June 2018. We messaged each other a couple of times, but when we did a call we felt an instant connection. From then on we did video and audio calls multiple times every day and we both knew that we wanted to be more than just friends. In April of 2019, I visited Amy in Houston, Texas and we got engaged.
I visited again in October and Amy was granted her visa in November.

Things haven’t been easy but we were determined to be together and despite all the difficulties, Amy finally came to the UK on 4 January. Now we don’t have to worry about anything – we are stronger together and we are looking forward to spending the rest of our lives as husband and wife.

Written by Jared Bennett

Review of the Findacure Drug Repurposing Conference 27th Feb 2018 where Tracy Lynch CEO and Co-Founder of WSUK was asked to speak about her family’s personal experience of WS and the formation of the charity.

For the trip to Norway I went with my mum, dad and sister. We went for 7 days from 14th-21st February. We flew from Heathrow to Oslo and then got a connecting flight to a town called Tromso in the North of Norway.

We stayed in Tromso for 2 nights, there we had heavy snow and got caught in a mini snow storm, but it was great fun having snowball fights and walking through the deep snow. We also went on an excursion to go on a reindeer sleigh, I loved it! On Tuesday we got on the Hurtigruten boat, we stayed there until Wednesday night. The boat took us from Tromso to a town called Batsfjord further along the coast. On the boat we went out on deck and stood looking at the views of the mountains.

Late on Wednesday evening we arrived at another hotel where we stayed for one night. The next morning we went king crab fishing on the fjord. We went on a speedboat, the wind was icy cold! I don’t eat crab because I’m vegetarian, but I enjoyed the experience. We then got a taxi to Kongsfjord, a tiny village with a population of just 25 people! There we stayed in a guesthouse, we were treated like family by the owners, they were very accommodating of my diabetes, making me special meals with less sugar.

The guesthouse was surrounded by the tundra, hence one night we had 47mph winds! And because there was no light pollution we were able to see the Northern lights on a Friday evening! To me they were very faint, but mum and dad described them to me. At the guesthouse they gave us traditional Norwegian foods, like pickled vegetables and waffles. We also went snowshoeing on the tundra.

On Saturday morning, we left early to get a flight to the town of Kirkenes which was close to the Russian border. We went on another trip to see the snow hotel, which was a hotel made of snow with ice sculptures, it was very pretty. There I also got to try some sledging! After staying at a hotel overnight, we got a flight to Oslo and then back to Heathrow.

The trip was unforgettable; I had the best time of my life. The things I saw will remain in my memory forever, despite my vision worsening. I would recommend that all young people/ children with WS should apply for a wish, it is an eligible condition. The opportunity to see such amazing things and have a break from hospital appointments is priceless!

Co-founders of WSUK, Paul and Tracy Lynch were awarded the PM’s Pride of Light Awards on 15th June. To read more about this and what the Prime Minister had to say click here

On 11th October 5 members of Exmoor Young Farmers partook in a sponsored bike ride, across all terrain in aid of a cause which is close to the clubs heart- Wolfram Syndrome.

As a club, Exmoor Young Farmers, we decided to raise money for Wolfram Syndrome UK because it’s close to our hearts.

One of our members, George Jones suffers from this rare genetic disorder. Our sum of £800 which was raised will go to the charity to help support and fund them to increase awareness of this syndrome but also to provide more research.

The ever challenging Bike ride started in Exford; the 5 members climbed up Mill Lane and across to the Land Sight of Dunkery Beacon. They then took advantage of the downhill decline into Wheddon Cross, down to Coppleham and then onto the village of Winsford.

The road soon inclined again with a steep climb out of Winsford via Ash lane heading towards Withypool. At Withypool it was time for a pit stop, where they were welcomed by Tony and Anita into the Tea rooms for a refuel, ready for the next step of the journey which was up Kiteridge Lane out onto Bradymoor, Pickedstone Plantation where they then followed the river up through to Simonsbath.

This was then the home straight for them, Simonsbath to Exford where they were cheered into the local pub to celebrate them finishing.

A member of my church, Graham Scott who is also a senior director in clinical pharmacology at Takeda, a large Pharmaceutical company, approached me in June to ask if I would be interested in talking about Wolfram Syndrome for their conference on rare diseases in September. The idea was to focus on putting patients at the heart of research and consider the person not just the disease. I was very keen and willing to take part as this would be an ideal opportunity to raise awareness of WS and share my experiences. My mum suggested that it would be good to also invite Professor Barratt to attend and talk about the research currently being done in this area.

The company arranged a chauffeur driven car to take us to the venue at their offices in London. I felt nervous but excited to be involved. The conference was made up of clinicians, researchers, scientists, communications and administrators and approximately 130 people attended.

It was opened by Atsushi Ogawa Ph.D, the Takeda Europe Site Head, and he explained that the aim of the conference was to gain a better “understanding of patient perspectives and needs and to enhance better decisions in clinical development”.

The next speaker was Bernard Souberbaille M.D Ph .D FFPM, Senior Medical Director at Takeda. He spoke about different rare diseases and explained how rare diseases can help common disease research e.g gene therapy but also how common diseases can help with rare diseases and treatments. He went on to explain that Takeda were already working on research into rare diseases and looking at innovative ways to take this forward.

Professor Barratt then spoke about the background and latest research on Wolfram Syndrome.

It was then my turn and Mum and I took our positions at the front of the audience on high stools which made me think of “Blind Date”! Professor Barratt then interviewed me on various aspects regarding WS. For example, getting a diagnosis, the progression of the condition, the impact on my life and my ambitions for the future. I thought it was important to explain what it was like living with WS but also to say that we should all be treated as individuals and not as the condition. I wanted people to know that it was important to involve those with rare diseases
in research. I also wanted to explain that having WS has made me more determined to succeed. It was great to have Professor Barratt doing the interview as it helped to put me at ease.

The audience was then invited to ask any questions. For example, Mum was asked for her experience on being a carer.

Graham said that the conference was a big success and they really appreciated our contribution and were very grateful to Professor Barratt for his talk on Wolfram Syndrome.

I really enjoyed this experience and I felt privileged to be able to talk about WS to such a wide audience and it is something I would be happy to do again.

– by Naomi Bennett