Good evening! Here's hoping that everybody is safely tucked up at home on this stormy night. Brr!
The last few months have been an action packed time for Without Wings. Now we've been up and running with the website for a few weeks, and things are finally beginning to settle into a more cohesive rhythm, it feels a good time to take stock. Firstly, many people are asking about groups/ support networks. We have shared information regarding existing groups on our information page and are trying to keep on top of any local meets via our Facebook page. Please please let us know if we've missed anyone off. We have also thought about what style any Without Wing's meets might take. In line with our 'positive living' agenda, we have therefore decided that really the key word here is inclusivity. This means that any meetings will be: 1. open to the extended community of people affected by these illnesses, including family and friends 2. fun/ interesting. Some time around Easter we will therefore experiment with this idea by holding a Manx RAmble in one of the plantations. This will be followed by soup and rolls (tbc). Please let us know if you think you might like to attend - either alone or with your children/ partners/ grandchildren/ close friends, so we can start thinking more clearly regarding a venue! We would love to hear from you. Next up - our blog! Now things are settling down we're going to experiment with writing the blog every other week - not every week. We are also looking to invite in the occasional guest blogger... So keep watching this space! Thirdly, back when we had our press release in January, several families of children with JIA (juvenile idiopathic arthritis) came forward and formed a little group. When we asked this group what they really needed and where we could help, the answer that came back loud and clear was 'AWARENESS!' And so came the idea of a February JIA awareness campaign. This week really saw the campaign get off the ground. On Tuesday, JIA group representative, Cat Haxby and Without Wing's Chair, Jackie, joined forces and went on Manx Radio's Women Today programme! You can listen to their collective interview here... http://www.manxradio.com/radioplayer/od/6678/ until next Monday. Cat is mum to 9 year old super champ Rio. She is also planning a charity car wash end of March at the Grandstand in aid of Without Wings! Details to be confirmed. Cat and Rio were also the faces behind our 'Inspirational Story' last week. Then, to top all of this, Without Wings invited one of the Island's youngest sufferers, Isaac Megson aged three, and his mother, Nicola, to name the bird on our logo! We gave them a list to help them decide but in the end they chose their own and it was... Lula! We're delighted! We announced the name on Random Acts of Kindness Day. To conclude JIA awareness, we will hopefully be hearing more about Nicola and Isaac's story in the local press - details of this to be finalised next week! Lastly, we are always looking for inspirational stories as these are so helpful to people living with these conditions. In particular, we want to hear from people who have something positive to say regarding the following: 1. coping well in the workplace 2. coping well with a diagnosis later in life 3. coping well even when you've had one of these conditions for many years. 4. Tips on how to cope positively as a parent to a young family. That's all for now! Have a fantastic couple of weeks!
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Well today our website has been up and running for a whole week! We've received hundreds of views and dozens of supportive messages from both well wishers and people in need of our help. It's been brilliant to hear from you and good to be assured that we're hitting the right mark.
Lots of people are asking how they can be more involved or how we can benefit them. Please check out our homepage for more information on involvement and take your time to look through the whole website with regards to our help. Our calendar of events for 2017 is also on the homepage. We have tried to include a lot of opportunities for both awareness and fundraising, as well as one or two social occasions. Please come along and support these - we would love to see from you! First up on our calendar, there are several forms of autoimmune arthritis, but the most heartbreaking has to be JIA, or Juvenile Idiopathic Arthritis. Without Wings have therefore chosen February as the month to highlight awareness of this particular expression of the illness. Thankfully, JIA is quite rare on the Island - though of course this is irrelevant to those families living the condition. Early diagnosis is also essential. Some of you might have seen on the news this week the tragic case of 5 year old Mancunian, Kaden Hadfield, who died after systemic JIA went undetected. Our JIA campaign is also a direct response to those Manx families who have contacted us and asked for support. They have now joined forces to create the new Facebook group, www.facebook.com/JuvenileIdiopathicArthritisIsleOfMan/ Please pass this information on if you know any families in the same situation. Support is vital, not just for the families of under 16s, but also for those of older teenagers/twenty-somethings, who are still living with the effects of JIA. This brilliant new group will ensure that local families can help each other in a proactive way. As part of this month's JIA campaign we are also very excited to say that not only will JIA supermum, Cat Haxby, (she has 4 kids - including twins!), be sharing her inspirational story in our 'positive living' section, but will also be joining Without Wing's Jackie on Manx Radio's 'Women Today' programme, Tuesday 21st February 2pm! Stick it as a date in your diary and remember to tune in as it's going to be a fabulous show. There might even be a recorded cameo from 9 year old JIA champ, Rio! Other JIA initiatives are on there way so watch this space! In other news, we are pleased to say we have received some very generous donations this month from Zurich, local businessman, Mr Matteus Von Oers and Celton Manx. We asked Celton Manx to donate specifically for three causes. These being: Funds to help launch our counselling/ practical help initiative. Counselling costs around £50 a session. We plan to raise enough money for every local person struggling with these illnesses to have access to at least 4, fully funded sessions during periods of 'without wingedness'. It's going to take a lot of work to reach our goal, but there is now a small pocket of funds available for those in need. Please contact us if you feel this service might be of use to you. JIA awareness/ support (this includes support for older teenagers and twenty-somethings who are still living with JIA), Funding for a Just Giving page so people can get more involved and begin helping us raise more money! We intend for this page to be up and running within the next few weeks. Finally, we are constantly trying to update our 'information' page on the website. Whereas we cannot endorse private services, we do feel it's important to include those services that can directly be of help for people living with autoimmune arthritis. We will continue to add to this page as and when we discover more. And last, but not least, for those people who are following the Paddison Program for Rheumatoid Arthritis and looking for access to a hot room, please get in contact as we have a plan! |
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January 2018
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