<div><strong>We are fundraising for:</strong>
</div>
<div><br />
</div>
<ul>
<li>The Dancing Eye Syndrome Support Trust (Reg. Charity number: 1060181).
</li>
</ul>
<div><br />
</div>
<ul>
<li>Leeds Hospitals Charity (Reg. Charity number: 1170369).
</li>
</ul>
<div><br />
</div>
<div>We will split the funds that we raise equally between the two.
</div>
<div><br />
</div>
<div>Most importantly, we are <strong>raising awareness</strong> of rare autoimmune diseases, especially <strong>Opsoclonus Myoclonus Ataxia (Dancing Eye Syndrome)</strong>.
</div>
<div><br />
</div>
<div>We've set up an Instagram account to blog/document all things Tri! Find us <strong>@</strong><a href="https://www.instagram.com/izzys.tri.for.dancing.eyes?utm_source=ig_web_button_share_sheet&amp;igsh=ZDNlZDc0MzIxNw==" target="_blank" rel="noreferrer noopener"><strong>Izzys Tri For Dancing Eyes</strong></a>
</div>
<div><br />
</div>
<div><strong>Our story: </strong>
</div>
<div><br />
</div>
<div>On Feb 14th we heard the words "we won't let her go home like this" in Paediatric A&amp;E and we almost cried with relief. Our daughter Isabelle had been turned away twice previously after doctors has told us "the symptoms are weird but we can't diagnose anything". She had lost her ability to walk, was getting full body tremors, vomiting, sleep disturbances and really crazy eye movements that we now know to be opsoclonus.
</div>
<div><br />
</div>
<div>Fast forward a blurry few weeks in the LGI and we finally had a diagnosis, Opsoclonus Myoclonus (OMS) or Dancing Eye Syndrome. OMS is a rare neurological condition which develops during infancy. It's an autoimmune disease which attacks the cerebellum (the part of the brain that deals with co-ordination), and it can be caused by a neuroblastoma (tumor) or an infection. It's so rare that many doctors don't know about it and we were so super lucky that Dr Taylor and his team had come across cases like this before and knew leading researchers in the field. 
</div>
<div><br />
</div>
<div><strong>What does the future hold? </strong>
</div>
<div><br />
</div>
<div>"The outlook for children and young people with opsoclonus myoclonus syndrome is variable depending on the severity of the symptoms when the condition is diagnosed. The majority of children will have a chronic relapsing disease and will require long-term immunosuppressive treatment.
</div>
<div><br />
</div>
<div>Relapses may be triggered either as the treatment is withdrawn or following a viral infection. Many children will experience ongoing problems with learning, coordination, behaviour and sleep."
</div>
<div><br />
</div>
<div>Great Ormond Street Hospital, (2024).
</div>
<div><br />
</div>
<div>For anyone wanting to read more about OMS/ Dancing Eye Syndrome these are two great resources:
</div>
<div><br />
</div>
<div><strong><em>1. The GOSH hospital summary:</em></strong>
</div>
<div><br />
</div>
<div><a href="https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/opsoclonus-myoclonus-syndrome-dancing-eye-syndrome-omsdes" target="_blank" rel="noreferrer noopener"><a href="https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/opsoclonus-myoclonus-syndrome-dancing-eye-syndrome-omsdes/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/opsoclonus-myoclonus-syndrome-dancing-eye-syndrome-omsdes/</a></a>
</div>
<div><br />
</div>
<div><strong><em>2. The scientific paper guiding much of Izzy's treatment: </em></strong>
</div>
<div><br />
</div>
<div>Rossor, T. (2022). "Diagnosis and Management of Opsoclous-Myoclonus-Ataxia Syndrome in Children". Neurology Neuroimmunology &amp; Neuroinflammation. e1153, 9 (3). doi:10.1212/NXI.0000000000001153 <a href="https://www.neurology.org/doi/pdf/10.1212/NXI.0000000000001153" target="_blank" rel="noreferrer noopener"><a href="https://www.neurology.org/doi/pdf/10.1212/NXI.0000000000001153" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.neurology.org/doi/pdf/10.1212/NXI.0000000000001153</a></a>
</div>
<div><br />
</div>
<div><br />
</div>
<div><strong>What are we doing? </strong>
</div>
<div><br />
</div>
<div>We are doing a sponsored triathlon across three dates in summer. If you are free please please come and join us or cheer us on. You can come to one event or all of them!
</div>
<div><br />
</div>
<div><strong>SWIM </strong>- 23rd June - Wyresdale Park Swim - £5 entry. Do as many laps as you’d like. Lifeguarded by Annie Kendrick of Attitude Swim
</div>
<div><br />
</div>
<div><strong>BIKE - </strong>20th July - Leeds Town Hall to Bingley Five Locks (&amp; back if you feel like it!) - Ride along the canal. 16 miles each way. Likely stop off points inc. Saltaire Brewery and picnic at the 5 locks.
</div>
<div><br />
</div>
<div><strong>WALK - </strong>17th August - Yorkshire 3 Peaks - There will be a group doing all 3 in one go. There will be another group just doing Pen-y-ghent!
</div>
<div><br />
</div>
<div>All abilities and fitness’ welcome. It’s not a race. We’re having a laugh and doing some sport for charity. Come and join us!!
</div>
<div><br />
</div>
<div><strong>Why?</strong>
</div>
<div><br />
</div>
<div>First and foremost we want to raise awareness of
</div>
<div>Dancing Eye Syndrome!
</div>
<div><br />
</div>
<div>Secondly we want to raise money for the Dancing Eye Syndrome Support Trust who provide incredible support and respite for families who are living with OMS and fund further research into the disease.
</div>
<div><br />
</div>
<div>We also want to raise money for the Leeds Hospitals Charity. We are eternally grateful to everyone looked after (and is still looking after) us at the LGI, from the paediatric neuro specialists to the nurses, play teams to domestics on L38. They're all angels.
</div>
<div><br />
</div>
<div><strong>JOIN US</strong>
</div>
<div><strong>SUPPORT US</strong>
</div>
<div><strong>RAISE AWARENESS! </strong>
</div>
<div><br />
</div>
<div>Sign up to join us here:
</div>
<div><a href="https://forms.gle/Bqz8BXzn5AsXQXXC6" target="_blank" rel="noreferrer noopener"><a href="https://forms.gle/Bqz8BXzn5AsXQXXC6" target="_blank" class="" rel="nofollow noopener noreferrer">https://forms.gle/Bqz8BXzn5AsXQXXC6</a></a>
</div>
<div><br />
</div>
<div><br />
</div><iframe media_type="0" media_id="3_sl9sg6b64" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/3_sl9sg6b64/?rel=0" frameborder="0" allowfullscreen="1"></iframe>
<div><br />
</div>

Robin Staveley

Karen Moore

Uncle Paul's Incredible Fundraiser

Jennifer Howson

Jane Thomas

David Pope

Angela Durr

Sarah Bailey

William Mitchell

Katie Wilson

Grandma Salthouse

sarah hodgson

Michelle Place

Maya Vegad

James Kitching

Thomas Courtney

Naomi Dennis

Sue Bokowski

Hannah Davies

Jennifer Mancini

Izzy's Tri for Dancing Eyes

Enter your donation forIzzy's Tri for Dancing Eyes