SUDEP Action

Making every epilepsy death count
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July 2017 blog

A place to thank, appreciate and celebrate our fundraisers.

July was brilliantly busy. This is what some of our supporters got up to.

Matthew Burling cycled 60 miles from London to Cambridge in memory of his cousin Owen Williams. He informed us:  “My 39 year-old cousin Owen died suddenly three years ago. It was a terrible shock to us, but to his close family, it was devastating. SUDEP Action was a great help to them, and as time has passed his mother has helped to keep his memory alive by fundraising for SUDEP Action with activities that Owen loved, like pub quizzes.

My son and I wanted a challenge and decided to take part in the London to Cambridge bike ride. We chose to support SUDEP Action in memory of Owen, to show that we still miss him and knowing that SUDEP Action will help and support other families when they need it. We had a great ride, finishing the 60 miles in just over 5 hours.”

Littlefield Garden and Brocklehurst Cottage Garden opened their doors to the public for the National Open Garden Scheme and raised funds in memory of Emily Sumaria, through the sale of tea and cakes, and plants. Rachel Sumaria, Emily’s mother said, “The sunny weather and some good publicity made for the busiest Open Gardens Day our village has ever had! On top of that, my husband and I had 30 friends from Kenya staying locally for a reunion, and they too all visited the gardens and enjoyed the special vegan and eggless cakes we had made. We ran out of tables and chairs but people sat on rugs on the lawn in the sunshine and everyone had a fabulous time. Some stayed for hours just chatting and enjoying the view and then having second helpings!”

Federica Wilk who opened Littlefield Garden says: “When preparing for an Open Garden Day, there is always a certain amount of trepidation in ensuring that everything goes according to plan. But what spurs me on, and makes me carry on tackling every problem with calm determination, is the thought that I am preparing the garden for the people to enjoy! Being able to help SUDEP-Action makes all the work and effort, and every cake baked, really worthwhile!”

Further information on the National Open Gardens Scheme can be found via:

Doctors John and Charlie from Framfield House Surgery completed the Triathlon at Alton Water in memory of former patient Alan Davies. They commented, “We both wanted to get fitter and have an aim for the summer but we have a family at the practice, who have been affected personally by SUDEP - we have seen the impact that it's had on them. We thought that it would be a good opportunity to raise some money.”

A great group of runners took part in the British London 10K. Denise Brown, Carly Clementson, Tammy Payne, Jamie Payne, Mary Botley, Michelle Sidders, Lucy Evans, Colin Chapman, Jez Andrews, Roger Scrivens, Rob Sayer, Sandra Scrivens, Lorraine Mickleson, Jessica Hills, Stephen Marsh, Sam Ellis-Cosgrove, Emma Carter-Desai, Justin Desai, Alex Ellis-Cosgrove, Sarah Hirst, Paul Moncrieff, Jeanette McKenna, Alan McKenna, Helen Fassnidge, Tamasine Franks, David Blower, Allen Ralph all ran in memory of loved ones. Fundraising and Administration Officer, Katie, enjoyed cheering everyone on and meeting them after the event. Special thanks to Jan and Barrie Burns for their support of the runners. 

Caron Robinson held a supermarket collection and awareness stand in memory of her daughter, Nikey Robinson. She informed us: “I went into Sainsburys, as I had not been in there before to raise awareness. Although, it was not as busy as my last supermarket event, lots of awareness was raised and questions asked about SUDEP and the risks. Six hours later and aching back and feet, I have hopefully given some important info to people who were in the dark about their epilepsy and the risks it's brings.”

Tammy Payne raised awareness and funds at her local PC World in memory of her partner, Pete Masters. She told us: “We held a fundraising/awareness day in PC World, Orpington. We had lots of fun things like a selfie frame, hoop the ears, raffle for cupcake bouquets, name the giant balloon teddy bear, glitter tattoos and Becky Butterfly. It was a really good day with the help of my niece and her little friend drumming up people to come and participate and raise awareness for Epilepsy and SUDEP.”

Bethany Hirst achieved her ambition of taking part in a skydive in memory of Charlie Burns. She told us, “When my friend Charlie passed away I wanted to do something to raise awareness of SUDEP, I wanted to do a skydive but I was 10 years old. After waiting 6 years I finally got to do it July 2017 just two weeks after my 16th Birthday. With the support of my family and the Burns family I managed to raise a fantastic amount. It was amazing and I will certainly do it again, I think Charlie will be proud of me.”

A sponsored walk took place in memory of Rowena. Walker Jo Rouse informed us: “On July 16th, my family and I set out to walk a 26-mile route along the canal from Whitchurch to Trevor Basin, in memory of my beautiful cousin Rowena, who we sadly lost last year. We wanted to raise money and awareness for SUDEP Action and it was wonderful all being together to remember Rowena. As we are quite a large family group, including many young children, this meant those that wanted to take part but wouldn’t make the 26 miles also came along and got involved along the route. Rowena’s daughter Emily needs a special mention too as we worked out she walked almost 10 miles quite something for a 7 year old. As a family we plan on carrying on our challenge tradition in memory of our loved ones so watch this space for more Trevor family events!”

Thank you and well done to all our July fundraisers. It is brilliant that you are helping to raise much needed awareness and funds. 

If you took part in an event in July and would like to be included in this blog please email [email protected]

If you have been inspired by any of these events and would like to start fundraising for SUDEP Action, please email [email protected].

Most of our fundraisers are fundraising on behalf of a family member or friend who has died. As we celebrate the success of our fundraisers, we keep in our thoughts their loved one who is no longer with us.