Nearly all ready for Christmas I hope? You guys out there are giving us Christmas presents already simply by asking as where you are to put the money you have already raised or are in the process of raising.
There are a couple of ways you can donate your money to support motor neurone disease research and also the care of patients with the condition. You can find links to two charities in the borders of our [original] blog, these are the Motor Neurone Disease Association (MND Association) and the Sheffield Institute Foundation. The Sheffield Institute Foundation exists to build and staff a centre of excellence dedicated to finding treatments and ultimately a cure for the condition. The MND Association is less directly involved in research [actually, the MND Association funds a lot of research - the Editor] but is concerned more with the quality of life of sufferers and their families. We would not presume to tell you which of the two charities is more worthy and would strongly recommend that you have a look at each of their websites.
If you choose the MNDA then please have a look at my dad’s tribute page as you can make donations through this and we are issued regular updates as to how the money is being used.
Please let me know if you have any other questions and I’ll be happy to help.
This is the most unsuspecting of posts, Neil turns solely to fundraising, no other thoughts of the day, but I know it was a day of inner turmoil and this was his way of not talking about it.
The previous evening we had made a special effort to wrap up warm, and go to the 'Light up a Life' ceremony in the grounds of the hospice where they hold a carol concert and switch on the lights of the Christmas tree. Each light was sponsored in the memory of a lost loved one, it was a beautiful sentiment.
From the moment we drove into the hospice grounds, we heard the faint sound of a brass band playing Christmas hymns, and my eyes filled up with tears. Everyone was there to remember someone they had lost and show their support for the work of the hospice. We had not thought ahead to the sentiment of the ceremony and the pain of our situation was clear to everyone there.
The sense of togetherness in grief that evening was very present and there was a great heaviness during a minute of silence after the lighting ceremony. I felt a true conflict of emotions, people were there to remember a lost relative, a friend, a partner or a child, but I was sitting right next to the person I was remembering, he was still with me, and for that reason I felt different to the rest of the people there. I was remembering his former self and I was grieving for his inevitable lack of presence in our future. Neil was too. The unfairness of it all had let self-pity creep in again. These were very difficult tears to take away from his eyes.
To signal the end of the silence the band quietly started to play Silent Night. This piece of music will now always hold this memory, I’m sure it’s too strong for time and happiness to take away, but I hope it will become about remembering the past and being thankful for the present. The band playing again was welcome as it covered the sounds of our tears. Our little boy had been very calm, considering that every face he was familiar with had been trying and failing not to cry.
Neil chose not to write about the ceremony, instead he chose to make another call to action. – Louise (2013)
December 18, 2008 at 11:23 am
Hi again, this is the charity that was set up recently after my brother-in-law was diagnosed this year. He also has the familial strain. Below is his recent video – again just trying to highlight this unashamedly cruel disease, and raise money for a sequencing machine. I think it’s so important that families can join together and hopefully gain strength from each other. I have to thank John Bennett from Windsor ins for putting me on to you and plattitude.
I send you, Neil, Louise and Oscar all my love,
December 18, 2008 at 11:38 am
PS As for “our hard earned cash”, I designed my own email card on a word doc, so people could print it out, if they wanted to and then we are giving all of our usual Christmas card and stamp money to further the cause of eradicating mnd.