I would like everyone to take a few minutes to link to the South Pole 2008 expedition being undertaken by Doug Oppenheim and Jeremy Rogers. Today is the day they leave.
Throughout all of the pain of the last few months, one of the most upsetting things is knowing that there still a lack of awareness and understanding of MND and exactly how destructive it is, not only for the sufferer, but all those around them.
It’s the disease that most health professionals say they’d least like to get. It’s the most cruel and undignified end.
It has been explained to us that part of the problem in funding research for MND is that it’s not financially enticing to the drugs companies as life expectancy is, on average, just two to five years from onset and it is in every case fatal. So, to me, it literally feels like someone is putting a price on my husband and son’s lives.
Doug and Jeremy asked us to write a short case study for them to help in their fundraising efforts for the Sheffield Institute of Translational Neuroscience (SITraN), and we were only too happy to share our story. It actually felt like we could do something to contribute to finding a cure and alleviate some of the frustration. The Sheffield Institute will be the world’s first standalone institute dedicated to MND, so it is very important to us to help get it off the ground.
I know some of you out there are looking for a serious way to contribute and I know you have the imagination, skills and contacts to raise more than a ‘charity tray-bake’ amount, so lets see it! I won’t go on about the specifics, you can see them all at www.southpole2008.org [no longer online – Ed.]
Wishing Doug and Jeremy a whole bunch of luck,
Louise, Neil and Oscar
We were really pleased to be asked to get involved in promoting this expedition. At last it felt like we could be involved in something tangible that could potentially raise a lot of money and awareness.
Neil asked me to write the case study for Doug and Jeremy’s information booklet. It needed to be done at a time when Neil was unable to type and he was suffering from constant headaches due to his oxygen saturation levels dropping. He was too tired to concentrate on dictating what he wanted to say. It was before we had the ventilator.
Rather than turn down the opportunity to help promote the expedition, Neil told me roughly what he wanted to say then sent me down the hall to the computer to write it. He was not, however, too exhausted to be a harsh critic of my writing skills, squeezed into the few minutes I had between cooking, cleaning, washing, feeding, lifting and toileting the pair of them. I was sent down the hall for re-writes at least four times! Again, Neil’s determination was one of his finest qualities.
Michelle, Tony and Maia
November 17, 2008 at 9:42 am
Hi Lou, Neil and Oz, We will pass this information to all we know. It is upsetting that there is not greater profile because MND doesn’t “make money” for the pharmeceutical industry. Is Neil looking forward to coming home on Monday? Welcome back. Love!
November 17, 2008 at 5:29 pm
Hi Neil, Louise & Oscar.
You have been busy…the site looks fantastic. Can we see some pictures of your wedding too!!
We hope that you have all had a good rest over the last couple of weeks and that you are looking forward to your return home Neil.
Speak soon, lots of love
Lula , Rick & Boys xxxx
November 18, 2008 at 11:04 am
Dearest Neil, Neil, Orange Peel
Big Rick here!
I’m sorry that I have not had the chance to speak with you over the last month or so, as always you are never far away from my thoughts buddy.
I caught up with Louise a couple of weeks ago, and she filled me in with all that has been happening with you, and I have been keeping up to date on the Plattitude, which is at the top of my list within the favourites section on my computer.
From reading your blog you may well be back @ home now from your two weeks away, I hope yourself and Louise are feeling a little more energized, and ready to take on the world.
We will speak again very soon
Love to Louise and Oscar, and a big hug from your big buddy to you.
Love you mate
November 19, 2008 at 6:42 pm
Hi Neil, Louise, and Oscar
Just wanted to say hi, I’m the designer of the website for Doug and Jeremy’s Antarctic expedition. I was really moved by your story and I have put a post on my facebook page to the Just Giving site so hopefully my friends will sponsor the guys effort.
Was just on bbc news and they have an article on MND, thought it may be of interest to you.
I’m so glad Doug came to me with this project it has been an eye opening experience for me and I hope it results in the Sheffield Institute of Translational Neuroscience become reality.
Take care of yourselves,
Slán agus beannacht