Absolutely amazing day today at the run or dye 5k. With great people and so many laughs. 18 runners in total although we did loose a few amongst the thousands. Thank you so much guys & girls  xxx Just a few pictures of the day.

 

Have a look at this AMAZING skate board up for auction for Connor. If you want to put in a bid please comment on the ORIGINAL post a link underlined below in order to be in with a chance. Thank you so much to Gavin Obsession Tattoostudio Clarke xx

"GET INVOLVED EVERYONE.
Ever since Vee from Skin Kitchen told me about this brave little fella I have wanted to help so come all and click on photo below and bid.

Please also visit Caring for Connor Campaign and like the page.
If you don't want to bid then please like and share in case someone on your friends list wants to bid (Any other donations are welcome, just get them to me and I will get them to Connors family"

Our £10,000 cheque has finally reached Halo Therapeutics. Just wanted to share the email we received this afternoon. Thank you to everyone, without all of you, this wouldn't have been possible. Come on Halo!!!  xx 

Dear Georgina and Wayne,

Thank you very much for your generous support. We received your cheque over the weekend and are putting the funds to immediate use. As you may know, we have encouraging early results from the first patients who participated in the HT-100 trial and we’re focused now on treating these and other boys for longer periods and generating additional safety and efficacy data. There is a tremendous amount to do to ensure that we keep moving the HT-100 development program as rapidly as possible, and we’re approaching this work with renewed enthusiasm based on the data we’ve seen to date.

Your generous support, along with that of other like-minded individuals and organizations, makes possible each step forward in the HT-100 for DMD program. We look forward to updating you on the program’s progress, and of course you should always feel free to contact me directly if you have any questions.

With gratitude, on behalf of the entire HT-100 team and Akashi

The Caring for Connor Campaign and our fight against Duchenne Muscular Dystrophy www.caing4connor.com. You can also find us on facebook at https://www.facebook.com/caringforconnorcampaign twitter https://twitter.com/caringforconnor instagram http://instagram.com/caringforconnorcampaign flicker https://www.flickr.com/photos/119714503@N07/  tumbler http://caringforconnor.tumblr.com/  linkedin https://www.linkedin.com/profile/view?id=371961364&trk=nav_responsive_tab_profile  

Check out some of our events at  https://www.youtube.com/channel/UC4bc5mVsIJVdIIRPHLULe2Q/videos 

please share Thank you 

A massive massive thank you to Keith at The Black Cat Club/ The Westcoast Bar, Dan at Live Music Matters and everyone else who has helped & organised, of what's going to be an amazing day & night......

A day of live music and fun for all the family to raise money for The Caring for Connor Campaign. It's only £5 for an all day wristband and we will be kicking off at 11:30 in the morning. Come and join the party and bring the whole family!

We have Superhero's, face painting, raffles, poetry, circus skills and live music from some of Kent's Finest unsigned acts!

Featuring Sarah Lucy Dole and Starlane, Craig Francis, spyplane Erin Scarlett, Siobhan McFadyen, The Boxing Octopus, Flame Pilots, Colonel Mustard, Gentlemen of Few, Jaeg, The Final Third, Wildfowl, Morning Departure, POLAR BEACH , Skaciety and Hey Maggie

https://www.facebook.com/events/777324305647164/?fref=ts

Only 20 days to go until the Caring for Connor Sky Diving team go to the sky. Most have set up a go fund me page to collect sponsor ships which is fantastic. What an amazing bunch!! This is Wayne's (aka Connor's dad). Please share and donate if you can. All help is very much appreciated xx

http://www.gofundme.com/93ovus

A little message from Connor. We recorded this a few weeks ago (bit dodgy quality) Thought we’d share. We are so grateful for everyone who supports us. It means so much x x www.caring4connor.com

So far I have raised £220.00 thank you so much for your support everyone, here is my go fund me page. I will be skydiving on the 10th August. For those that don't know about Connor, here's a brief description. In March 2013 my son Connor (now 4 years old) got diagnosed with Duchenne Muscular Dystrophy :( Duchenne is a progressive muscle wasting disease that will rapidly take over his body. He already has a small wheel chair for long distances, he will be in a power wheel chair full time by age 10, most boys dont live to see age 20. Along the way he will have many other complications such as week bones, fibrosis, he will require a ventilator to be able to breath, decreased heart function leading to heart failure and pneumonia. He will loose every function that we all take for granted, like feeding ourselves, going to the toilet and even stratching our own noses. I can't just sit back and watch him decline and let Duchenne take over him. I have to do what I can in the hope that we might secure treatment, but even better, find cure for Connor. In doing this, we hope to not only benefit Connor, but all other boys too, who are unlucky enough to be diagnosed with this heartbreaking disease. We started up a campaign called Caring for Connor Campaign you can find us on facebook we also set up a website www.caring4connor.com. As you can imagine our lives have changed dramatically and totally been turned upside down. I have always wanted to do something outrageous but never had a good enough reason until now. I am trying to raise awareness and funds for my son. Please click the link to see our story. Thank you for taking the time to look at my profile and supporting us in our fight against Duchenne Muscular Dystrophy. This young lady done one for us last year.  We also have an event Sunday find all the details here 

Just a quick one to remind everyone that this little man still has no idea about Duchenne, so please try and be a little discrete. Although this may be hard with older children around. The less that's said to them the better. We have approached Connor about 'his poorly muscles' but he insists they are fine. How do you tell a 4 year old about this? to us, he's just way too young xx www.caring4connor.com

Hi my name is Wayne. In March 2013 my son Connor (now 4 years old) got diagnosed with Duchenne Muscular Dystrophy :( Duchenne is a progessive muscle wasting disease that will rapidly take over his body. He already has a small wheel chair for long distances, he will be in a power wheel chair full time by age 10, most boys dont live to see age 20. Along the way he will have many other complications such as week bones, fibrosis, he will require a ventilator to be able to breath, decreased heart function leading to heart failure and pneumonia. He will loose every function that we all take for granted, like feeding ourselves, going to the toilet and even stratching our own noses. I can't just sit back and watch him decline and let Duchenne take over him. I have to do what I can in the hope that we might secure treatment, but even better, find cure for Connor. In doing this, we hope to not only benefit Connor, but all other boys too, who are unlucky enough to be diagnosed with this heartbreaking disease. We started up a campaign called Caring for Connor Campaign you can find us on facebook we also set up a website www.caring4connor.com. As you can imagine our lives have changed dramatically, I have always wanted to do something outragious but never had a good enough reason until now. I am trying to raise awareness and funds for my son. Please click the link to see our story. Thank you for taking the time to look at my profile and supporting us in our fight against Duchenne Muscular Dystrophy.

http://www.gofundme.com/93ovus

Wayne, Connors Dad

   http://www.gofundme.com/93ovus

Finally got the beat the bog video on you tube. Although the first part of the video didn't record so were missing our first lot of runners. xx 

http://youtu.be/DHiPWY0vRPw

www.caring4connor.com

https://www.facebook.com/caringforconnorcampaign?ref=hl

Handsome little man with his new "superman" haircut apparently  x

www.caring4connor.com

Looking through old photos, found this and thought we’d share. Kye supporting global rare disease day for his big brother  xx

https://www.facebook.com/skin.kitchen.1?fref=ts

Thanks for you'r support skin kitchen if any one 

would like tickets please get in touch with us or 

on the link above.  

Info on Duchenne Muscular Dystrophy: Is the most common fatal genetic disorder diagnosed during early childhood, affecting approximately 1 out of every 3,500 boys and 20,000 babies born each year. DMD is a recessive X-linked form of muscular dystrophy, affecting around 1 in 3,600 boys, which results in muscle degeneration and eventual death. The disorder is caused by a mutation in the dystrophin gene, located on the human X chromosome, which codes for the protein dystrophin, an important structural component within muscle tissue that provides structural stability. While both sexes can carry the mutation, females rarely exhibit signs of the disease. Symptoms usually appear in male children before age 6 and may be visible in early infancy. Even though symptoms do not appear until early infancy, laboratory testing can identify children who carry the active mutation at birth. Progressive proximal muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed first. Eventually this weakness spreads to the arms, neck, and other areas. Early signs may include enlargement of calf and deltoid muscles, low endurance, and difficulties in standing unaided or inability to ascend staircases. As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue (fibrosis). By age 10, braces may be required to aid in walking but most patients are wheelchair dependent by age 12. Later symptoms may include abnormal bone development that lead to skeletal deformities, including curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs, eventually leading to paralysis. Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for patients afflicted with DMD is around 25.

Our story

Please watch like and share to help us raise awareness for this vile disease.