Good news stories

2020 has been a difficult time for everyone but despite coronavirus life has been going on, so we have been on the look out for good news stories from the CNM/MTM community.

Want to  join in spreading some happiness? Maybe you have celebrated a birthday, reached a milestone, received an award or honour, achieved something in your work, passed an exam, completed a degree, graduated or something else? If you have good news, please share it with us together with a photo, by sending an email to cnmmtminfo@gmail.com so we can celebrate with you.

Rian

In April, Rian from Cork, celebrated his 10th birthday with a surprise visit from the emergency services.

Members of Cork City Fire Brigade, the Roads Policing Unit, the Community Policing Unit and the Garda Dog Unit gathered outside Rian’s home and sang him Happy Birthday. Garda Pat Harrington also offered Rian the opportunity to go on patrol of the local neighbourhood with him and his garda dogs, Laser and Rex, once the coronavirus restrictions have been lifted and Rian’s school friends joined in the celebrations over video call.

Amy

Amy was diagnosed with centronuclear myopathy, Dynamin 2 mutation at the age of 16. She recently completed her Digital Photography degree at the University of Chester after three years of hard work.

amy

During very challenging circumstances Amy had to roll with the punches, going from putting up an exhibition at the start of the year to designing an online one, the concept of which was the  ancient gods and how different society was today.

Gods of Modern Day is a series of Fine Art portraits that depict Greek Gods in contemporary scenes.  Dionysus, the God of Wine, is depicted in a Night Club setting whilst Demeter, the goddess of harvest, is seen perched on a hay bale within a crop field presenting a fast food cup instead of her traditional wheat or torch. Ares, the God of War has been depicted against the ruins of Athens,  he yields a wooden slate instead of a spear and a baseball cap and heavy eye make up instead of his typical helmet.

View the Identity exhibition and Amy’s portfolio can be seen below.

Spencer

Spencer is a cum laude graduate from Central Bucks High School West in Doylestown, PA. He has worked very hard to achieve this accomplishment. He is currently 19 years old and will remain at Central Bucks West High School Post -12 to study computer programming.

Corey and family on graduation day.

Wicktor

Wiktor from Poland is five years old – he is diagnosed with myotubular myopathy and loves to draw.  We absolutely love Wicktor’s smiley work.

Illustration by Viktor.


Logan

Logan is 8 years of age and in the 2nd grade of  Alamance Elementry in Greensboro, South Carolina. This year he has made much progress in school and in June he was named Mr Congeniality by his teacher Miss McAmis.

Logan with Mr Congeniality certificate.

Anthony

On 10 May, Anthony from Monroe, Connecticut celebrated his 19th birthday.  Each year Anthony’s family celebrate his birthday with a big birthday bash and they were not going to let coronavirus stop them, so celebrated with a drive by celebration.

People were encouraged to honk and be as crazy as they wanted as they passed in cars and on floats.  There were posters and decorations and local fireman attended with  sirens and lights in their cars, while Monroe police directed the traffic to ensure the event went smoothly.

Anthony's birthday celebration.

Anthony's birthday celebration.

The Big Sunflower Project (mid year report)

2020 is the tenth year of The Big Sunflower Project and a milestone event for the little project, which originally was only meant to last for one year.

Dwarf sunflowers growing in wellington boots.

Obviously, no one expected the coronavirus situation and in March seed distribution was suspended.  We tentatively re-started in April and during late April and early May, were able to get some final batches of seeds safely in the post. Recipients included children currently home from school, schools that remained open to the children of key workers, a charity that supports people recovering from homelessness and addiction, a specialist worker for the Early Help and Prevention Service, an allotment project for children and adults with additional support needs, Enable Scotland (a charity which works with people who have learning disabilities), a residential home for older people with dementia and a hospital caring for a child with myotubular myopathy.

Sunflowers growing at Westminster Primary School.

Our intention at the beginning of the year had been to distribute 300 packets of seeds and we now know of over 290 people participating in the UK, on the Isle of Man, France, Greece, Germany, Sweden,  Australia and the Philippines, so we are feeling a tiny bit proud of ourselves for getting so close to our target at this difficult time. 238 places are currently plotted on the project map which can be viewed below. Click anywhere on the map to open it up and click a sunflower to learn about the people growing sunflowers in a particular location.  If you are growing sunflowers but cannot see yourself on the map, please ask to be added. As always, we wholeheartedly welcome anyone who grows sunflowers to take part in the project, even if they did not obtain their sunflower seeds from us.

In addition to posting seeds out, seeing as we had been thrown a curve ball, we decided to do a few things differently this year too.

Earlier in the year the project received a large donation of vegetable seeds. During the first three months of the year, these were sent together with sunflower seeds, to anyone who applied to the project and advised they had an allotment or stated they wanted seeds for a gardening club but from late April onwards, we began to give away our sunflower and vegetable seeds locally and we planted dwarf sunflowers, peas, cucumbers and runner beans and gave small plants away too.

Free seeds and plants.

Secondly, we decided to send seeds to schools we knew were still open for the children of key workers.  We thought being a small person with all this chaos going on right now, together with not being able to be with your friends and watching your parents go off to work each day must be quite a scary time, so decided to send a few surprise packages to schools, in the hope it would bring some cheer, make the children feel a bit special and give them something to look forward to – hopefully staff and parents would get some enjoyment from seeing the sunflowers too. It has been very lovely to hear from some of the schools and other recipients that the seeds and plants have been well received.

Jen and Holger planting sunflower seeds.

ZNM-Zusammenstark! e.v. 

This year the project is once again being joined by ZNM-Zusammenstark! e.v. growing sunflowers in memory of Emil, who was diagnosed with myotubular myopathy and sadly passed away in 2016.  Founded in 2015, ZNM-Zusammenstark! e.v. is a German association for those affected by centronuclear and  myotubular myopathy. Visit their website to read what they have to say about being part of The Big Sunflower Project.

Bear watering sunflowers.

In the news

The project has received some lovely publicity this year which can be read below and we are incredibly grateful to those who have taken the time to write about what we do.

Sunflowers growing at Spitalfields Crypt.

Resources

If you are  using your sunflower seeds for educational purposes, fundraising events or would like to raise awareness of centronuclear and myotubular myopathy at the place where you are growing your sunflowers, you can download flyers from the resources area of the website. You will also find resources for teaching children and to start conversations about equality and diversity.

Make a donation

The Big Sunflower Project is an initiative of The Information Point for Centronuclear and Myotubular Myopathy. The aim of the project is to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular myopathy, by sending seeds to people who have never heard of the conditions and requesting photos in return, which are shared in the Information Point newsletter and on the project social media pages, again raising awareness of centronuclear and myotubular myopathy. There is no charge for project seeds or the cost of postage, the project does however, welcome donations to ensure the future of the project and to enable seeds to be sent to as many people as possible each year. If you have donated for your seeds, thank you. If you would like to donate, you can learn more about how to do this below.

Our friends

This year project seeds have been donated by Thompson and Morgan and Tamar Organics. Seeds were also donated by Mike Rogers, Linda Fowler and Flower Power Lymo who grew sunflowers during the 2019 project and saved their seeds.

We are also grateful to everyone who has donated to The Big Sunflower Project since 2011, enabling us to celebrate our 10th anniversary.  You can read about these people below.

Looking forward to seeing everyone’s sunflower photos over the summer. Until then  stay safe everyone.

Planting sunflower seeds in Birkenhead.

Further information

Further information about the project can be found on The Big Sunflower Project website and on social media, where photos can be shared using #TheBigSunflowerProject. Use #centronuclear, #centronuclearmyopathy, #myotubular and #myotubularmyopathy to help raise awareness of centronuclear and myotubular myopathy too.

 

Powerwheelchair for Milosz

Milosz lives with his family in Market Harborough, Leicestershire and is diagnosed with X-linked myotubular myopathy. Over the last six months Milosz’s needs have changed and he now requires a specialised powered wheelchair.

Milosz

Milosz’s manual wheelchair has become too small to him and the back support is no longer efficient. In addition, Milosz had developed mild scoliosis which requires specialised back support. And while Milosz can self propel his manual wheelchair indoors, he relies on people to push him on longer journeys outdoors. As a pre teenage boy, Milosz craves some freedom and a powered wheelchair would enable him to be more independent.

Milosz’s family began the process of arranging for a power wheelchair in September 2019, applying for one through a charity but due to coronavirus, the charity were unable to fund all of it and organising fundraising events at this time is difficult, so the family are now aiming to raise the £6,700 needed themselves, before Milosz starts secondary school in September.

Stanley

Milosz’s friend Stanley is helping to fundraise also, by running a marathon. Starting on 26 May Stanley began running a mile every day for 26 days and is aiming to raise £2,000.

Could help fund this essential piece of equipment for Milosz? Please visit the websites below to learn more and donate.