Support our fantastic 20 for 20 Team!

It is weird to think that my challenge ended on Saturday. I’ve lost count of how many poems I’ve written, but maybe that isn’t what really matters most. I have raised a lot of money and there may be more to come, and whilst this is, of course, important, it is not to me the most important. Because what has struck me in reading about and participating in this challenge is the support and love that everyone has for each other. It has also given me a purpose.

I think that for many of us with MDS, no matter how severely we have it, a sense of purpose has been taken away and our lives changed in a way that is beyond our control. However, by entering a challenge like this, purpose is reignited and for twenty days, for me, there has been a glimmer of in my otherwise quite bleak and black world.

I am amazed by the brilliance and inventiveness of the challenges (and forgive me if I don’t name them all); face painting, balloon sculpting, pancake eating combined with piano playing, painting of a hare, gorilla and a highly fought over snow leopard; running and walking up and down stairs (my daughter always claims that whoever invented stairs was evil and I quite agree), autumn cleaning, cake making and swimming.

The participants are many and varied from families, individuals, carers and those who have suffered loss. We have all stood up to this horrid illness and raised a staggering amount of money much to everyone’s (especially Jan’s) delight. £10,000 was the target and that has been doubled and then some!

Hopefully with this money, research and awareness of MDS can be raised and people don’t have to endure years of illness and become another ‘horror story’ that has to be told to get someone’s attention about what this illness is and how it needs to be detected early in order to save lives.

So, thank you everyone for all your inventiveness, support, kind comments and endurance in this and your own personal challenges. Without any of us, this could not have been achieved.

Well!  Week 2 of this amazing campaign is over, and I see from our joint JustGiving Page that we have raised a staggering…

£17,679 + £2,139 in Gift Aid, =£19,818 – but it goes up each time I check!

And, in those marvelous words by the Carpenters, “we’ve only just begun”… 6 more weeks to go and we’ve already almost doubled our target with more people coming on board every day!

We have a WhatsApp group of fundraisers set up by Jan to give each other encouragement. I have found it really moving how much of a struggle it is for the MDS patients to complete their challenges, given how profoundly their disease affects them.  There’s the all-pervasive MDS fatigue, complications and weakness following stem cell transplants, gut problems, rampaging mouth ulcers, medical procedures that did not fulfil their promise of more wellness, side effects of treatments and energy dips between transfusions.

What I have also found personally uplifting and humbling is the support I have received from all sorts of people – from neighbours, from friends of my own children, from my choir members, book club, not to mention my own close family and my nieces and nephews also giving their encouragement. The thought that people feel I am valued and doing something valuable brings tears to my eyes. I know others in the group feel the same.

Something else that has struck me about this campaign is how the demographics of our fundraisers has changed, of necessity, due to Covid-19.  Given that most of us with MDS are not up to anything particularly energetic, in the past we have been so grateful for and reliant on the support of younger, fitter friends, relatives and supporters fundraising for us by doing challenging physical feats like marathons and other running, swimming and cycling endurance events. Undeterred, our trusty little band are doing painting, poetry, baking, litter-picking, reading, pampering and the fitter ones are doing some challenging feats of physical endurance.  There’s even a brave skydiver!

In my true spreadsheet nerd fashion, I’ve analysed the data (we should always follow the data!) and found that, of our 34 fundraisers, we have:

Patients                                                                                                                        12

Staff and volunteers                                                                                                      5

Friends of Staff and volunteers                                                                                      6

Relatives of MDS patients                                                                                              4

Relatives/ friends remembering loved ones who sadly have died from MDS                       7

So, it’s a bit like the Aretha Franklin and Annie Lennox song, “Sisters are doing it for themselves”! For “Sisters”, read “MDS patients and their key supporters”. But we’re not really doing it for ourselves-  we’re doing it for all the people in the future who will be given the devastating news that they have MDS so that they, too, have somewhere to turn to for information and support.

Well done, everybody. Keep it coming!

Wow, what an amazing first #20for20 week we’ve had!

Many of us in the MDS community have been participating or supporting others in the #20for20 campaign. This came about because of the financial impact of the Covid-19 pandemic on charities due to cancelled events like The London Marathon, Prudential Ride 100, and The Great North Run.

MDS UK and 19 other charities collaborated to ask for help by starting a series of challenges on September 20th. MDS UK is a small but vital organisation helping those affected by Myelodysplastic Syndromes (MDS), a rare blood cancer.  We serve the entire UK, with only 2 full-time staff, 3 part-time staff, a fabulous committee, and of course, our web develop, Manuela. Everyone does an incredible job, and that’s why so many of us gladly signed up for #20for20, which incidentally coincides with Blood Cancer Awareness Month!

So, what have we all been up to? The challenges have ranged from writing 20 poems in 20 days, to running 5k around a village for 20 days. We also have talented artists: one is painting a picture for 20 minutes a day and another is making and selling some colourful Christmas cards. One bright spark is doing 20 mins of exercise a day for 20 days; another is hula-hooping!

We have amazing 6-year-old grandchildren doing extra chores like making beds and picking up after their kitten in memory of their Uncle. Someone else is walking the Wandle Trail (20km) and another brave soul is doing 20 minutes a day of something that will aid recovery. This person only had their transplant 100 days ago (a very important milestone!) We also have a “Rock Chick” who is doing a 20-minute danceathon. We have an avid walker doing 20 walks lasting 20 minutes over 20 days and someone swimming 20km a day in Singapore!

One of my favourite challenges is a wife pampering her husband for 20 minutes a day, which she says will be on record! I also love the musical challenges! One novice pianist is practicing the piano for 20 minutes a day, learning a song to play at the end of the challenge. Finally, we have me singing a song a day with something special reserved for the end!

I am in awe of our amazing community. So many of us know what it’s like to be sick or love and care for someone who is; we sadly also have those doing these challenges in memory of a loved one. At this time of national and international uncertainty, it’s fantastic that many of us are working for such a good cause and in the process sharing some love and light. We hope our efforts produce a smile!

Please support us if you can! Thank you!