SUDEP Action Day 2020 - My Way To 5K reflection blog from our CEO
It was lovely to join with over seventy other supporters to walk My Way To 5K for SUDEP Action Day 2020 as part of a week when we united with hundreds of organisations and many thousands of people all about #SpeakUp2SaveLives!
The My Way To 5K Walk was a wonderful moment after a busy week to connect again with so many friends and supporters of the cause who make all the work possible.
I chose a walk by a river with my daughter Kyra and our dog Woody. The river closest to us is the River Thames. I was brought up in the mountains and close to the sea so am drawn to torrents and waterfalls, but I love the strength and majesty of the River Thames as it makes its way surely and certainly to connect with our Parliament and to meet the Sea.
Kyra is learning maps so we measured the 5-k distance on the map with a piece of string and a ruler which was just as well as Kyra’s step counter didn’t convert to kilometres!
In some ways a River walk was not the best choice. It was muddy to start with and as we reached half-way it started to rain hard for the next 2.5 km. It made me think a little of the SUDEP cause!
The SUDEP cause has never been easy, but it is one that all in our community can take pride in. In the UK we have safety solutions and have created partnerships already in practice that need to be rapidly accelerated to give people the knowledge and the pester power to access what they need to reduce their personal risks. No amount of mud will stop progress.
We took shelter under a magnificent railway bridge. We can feel strength too from knowing that not only do we walk the walk to tackle deaths, but it is a walk on the solid ground of evidence alongside thousands of families who all have their own truth.
Like the bridge, we too have years of experience in overcoming physical distance and developing strong connections. When we sat down with Lucy Bidgood who developed the awareness walk alongside SUDEP Action Day, it only took a minute or two to come up with a plan about how we could overcome pandemic challenges and the My Way To 5K became a reality!
It was a beautiful journey – the leaves in greens, yellows and browns and the river full as we walked alongside. We were rewarded in the end by a wonderful rainbow just over the river. It also made me think of the SUDEP journey!
As Faye and Fraser shared their impactful blogs last week about raising awareness, I was reminded along the Thames that every “small stone casts a ripple”. I began my journey on my own and met four wonderful women. SUDEP Action today is thousands of people and there are hundreds of organisations that help whether that is a sharing of a tweet on SUDEP Action Day or relationships that have developed to an enduring partnership to save lives. One thing is certain – the pandemic like all the other barriers we have faced will not stop our river of change!
After an exceptionally demanding six months since the Covid pandemic reached the UK, it was wonderful indeed to take time to reflect. It is such an honour to walk alongside all the supporters of our cause during these times who are quite simply our heart and our engine room. My wonderful team at SUDEP Action, who make SUDEP Action Day and all our work possible, are tireless because of this.
Shortly we will be launching `Lives Cut Short’ which is our research on why Government and others need to listen now to the worrying predictions we made in May, and the alerts we sent them about epilepsy, risk and deaths. All of us are ripples in the water. Please get in touch though ….if you are happy to lend your story to us by contacting [email protected] and help us cut through to all those that need to be listening so we can save lives now.
