TEAM MAP NEMALINE
‘Team MAP-Nemaline’ is the collective name given to the forever growing group of people that support Meriel in one way or another. It all evolved in 2016 when Anna-Marie and Mr Kruze initiated the first fundraiser for MAP Nemaline. Meriel’s parents set this fund up with the help of Muscular Dystrophy UK (MDUK), creating the name by using Meriel’s initials. MAP Nemaline is a restricted account within Muscular Dystrophy UK. It will fund Nemaline Myopathy research projects being carried out in order to help those with Nemaline Myopathy in future generations.
Due to the Covid 19 pandemic, the 2020 Oxford Town & Gown had to be adapted this year to consider government lockdown rules. MDUK catered for the first time ever a virtual 10k/3k run, with the option of even wearing your Dressing Gown!
All though it was disappointing not to have the usual group gathering in Oxford city centre for the 39th run, Team MAP Nemaline have actually enjoyed the fact that they could ALL participate without being a hindrance to the more serious runners and adapted their personal activity due to injury or ability.
Two of Meriel's carers now have knee training injuries. Anna-Marie chose to walk 10k in her wellies around local fields (Too cold for flip flops) then she trotted the last 1k on her treadmill and Abbie cycled 50k (The longest that she has ever done in one stint).
Many of Meriel's teachers even ran/walked upto 10k in their dressing gowns! (Special Mention to Mr Bower for actually running a HALF MARATHON!) Meriel's school friend & sibling dressed up as Superheroes and managed to run more than the children's run, they did 5K!
Meriel started her 3k by doing laps of a tennis court and finished off with her strong swimming spirit.
Massive shout out to all of the MDUK runners and staff for helping make this event possible.
KEEP TRAINING - MDUK 40th Town & Gown NEXT MAY!
28th March 2020
WATCH THIS SPACE
Introducing Our Skydive Team:
MAP Nemaline - DandeLIONS
(Seven of Meriel’s brave neighbours)
A Team of Meriel's seven neighbours (aka The DandeLIONS) will take the ‘leap of a lifetime’ with Muscular Dystrophy UK. Mimicking the nature of the Dandelion flower dispersing their message by parachute.The DandeLIONS (D'Lions) will take the ‘leap of a lifetime’ with Muscular Dystrophy UK on 28th March 2020 (Weather permitting).
The initiator: Meriel’s Hairdresser Gemma has been inspired by Meriel’s continuous effort to tick her Dream List, that Gemma has decided to attempt her dream to celebrate her 30th birthday in 2020
- A SKYDIVE (Tandem). It felt appropriate to do so whilst supporting Meriel’s cause. Six of Meriel's neighbours will be joining Gemma to take the leap.
Dreams & goals will be accomplished by all & with your help The DandeLIONS will help raise awareness of Meriel’s weak muscle condition, Nemaline Myopathy & in the process raise funds for MAP NEMALINE fund within MDUK.
2 Charities - 2 Challenges
- 1 Event
Meriel challenged her swimming skills for a 2nd time,
she was inspired by Ross Edgley's achievements
(First to swim around the UK without touching land)
and encouraged by GB Olympian Bobsleigher, Toby Olubi.
Toby first met Meriel at school in September 2018 and soon became a great fan. Toby constantly encourages the next generation with his passion and "his BIG GUNS” (Meriel’s words) Meriel was delighted that he surprised her when he came to watch her attempt
Mermaid’s Mission. Mermaid Mission RAISED £2,9002 (Inc Gift Aid)
Refusing rest time on her ventilator between swims,
Meriel swam 18 m supported, 72 m using her woggle
Since Meriel’s last Swim Challenge (2016), things have become a lot more difficult due to her increased scoliosis and weakened lungs. Meriel now uses her breathing ventilator full-time, maintains her independence by using a powerchair and is fed via her gastrostomy peg.
Thanks to ‘Mermaid Powers’ and less restrictions on her body when in the water; amazingly, Meriel finds breathing in the pool a little bit more comfortable.
Meriel’s condition has a huge impact on her everyday life but she still sparkles and accepts all that is changing with great bravery and spirit.
ONLINE DONATIONS OPEN UNTIL FEBRUARY
Meriel chose to raise awareness of two charities:
(For Info Click Names)
Join Meriel in applauding the amazing staff from Glasgow Children’s Hospital for whom she is extremely grateful. All funds raised will be shared between Map Nemaline and Glasgow Children’s Hospital Charity.
Scottish Charity No
In May 2019, Team MAP Nemaline hosted an evening of baroque music performed by the Cothill House choirs at Deddington Church. The evening included a stunning violin solo from Leo Zhu, a beautiful solo from Meriel’s brother Miles and a number of uplifting pieces from the orchestra and choirs combined. Over 130 guests attended on this special spring evening. Meriel, her family and Muscular Dystrophy UK, would like to thank all who attended as well as thank those who put in so much work to ensure that the evening was a success. An fantastic total of £14,300 was raised to support research into Meriel’s condition, Nemaline Myopathy.
TEAM MAP NEMALINE supported the 38th MDUK Town and Gown race in Oxford.
This year was Meriel's first attempt to do the 3k independently using her power chair. She was supported by family and friends who ran the 3 or 10k. Approx 5000 runners were expected and the sun shone.
Thank you to all for supporting this amazing event!
See you next year with a forever growing team! (Usually 2nd week in May)
This year Meriel wanted to participate in the 2018 Oxford Town and Gown race. School friends from Kitebrook Preparatory School and Cothill House and a team of adults supported her this year. Anna-Marie (Carer) and a couple of friends took turns pushing Meriel in 'Walter' her wheelchair around the 3k Kids Route. Crossing over the finish line hand in hand oozing plenty of DREAM STONE SPIRIT. Another fun day for all whilst raising funds and awareness of MAP Nemaline.
An Exclusive Fundraising Dinner with Nawamin Pinpathomrat:
On Tuesday 13 November 2018, we hosted an Exclusive Fundraising Dinner with Nawamin Pinpathomrat, 2018 MasterChef UK Finalist at the Ashmolean, Oxford. Nawamin very kindly offered to cook a delicious three-course dinner in aid of MAP Nemaline and Muscular Dystrophy UK.
Muscular Dystrophy is a cause close to Nawamin’s heart.
Watch to reveal the outstanding amount raised for the charity & how much a copy of THE DREAM STONE was worth at auction!
Meriel's brother Miles and his friend pushed Meriel around the 5k fully accessible fun run around the Olympic Park & afterwards relaxed at the family festival. (Click Photo for PL website) The children raised more funds for MAP Nemaline.
Meriel was invited to start the 2017 Oxford Town and Gown race. School friends and a team of adults supported her on what turned out to be a glorious and fun day for all whilst raising funds and awareness of MAP Nemaline.