Duchenne Muscular Dystrophy Awareness Day

Today is Duchenne Muscular Dystrophy Awareness Day. 

[make sure to read to the end of the post to make sure you don’t miss out on the fundraiser!]

About the condition

Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact.

Muscle weakness is the principal symptom of DMD, first affecting the muscles close to the core of the body before developing into weakness in the muscles closer to the extremities. 

Later on, the heart and respiratory muscles are affected as well. Progressive weakness and scoliosis result in lowered lung function which can eventually cause acute respiratory failure, and - the heart being a muscle - is also at risk of deterioration and eventually cardiac failure. 

This condition is life-limiting and life shortening, with the current life expectancy being mid-twenties. However, advances in pulmonary and cardiac medicine mean that the life span of many sufferers has been prolonged, with many people living into their 30s and beyond.

How does DMD impact my life?

This condition is still fairly new to me, being the condition that my boyfriend - Sam - suffers from. It isn’t new to him, however. The condition itself is heartbreaking, and thinking about it too much terrifies me, but he reassures me, calms me down when I’m sobbing on the phone, and always somehow makes me smile at the end of the most awful conversations that most people our age don’t even have to think about having. The way that he copes and keeps so positive is admirable, he is lucky to have the most supportive mum who gives him the best care and the best life she possibly can, but even those closest to him can’t begin to understand the physical and mental challenges that he faces on a daily basis. And still, he is the strongest, bravest, most selfless person I have ever met; he would do literally anything for me, cares so much about me & my health more than his own, and couldn’t be a better boyfriend given the the situation we’re both in and the illnesses in the lives we both live. 

Sam’s perspective of life with DMD

'DMD is such a hard condition to live with and I've struggled in the past with accepting the condition and living with it. With the support of family members, friends and health professionals I look at life differently. 

I live everyday to the fullest, I stay positive about everything and if something gets me down I talk about it. By talking to others with DMD I understand that we all go through similar things and that has helped.

Now that Katie is in my life I've become even more positive about things and she supports me so wonderfully. I can't imagine life without her love and support’. 

👇👇👇👇👇👇👇👇

FLASH FUNDRAISER FOR DMD

I am holding a raffle in aid of those who suffer from this condition, with 100% of the funds from the tickets sold going towards Duchenne Muscular Dystrophy. 

Tickets cost £1 and draw will be held when 100 tickets have been sold. 

A countdown to the number of tickets left will be displayed below and updated on both my blog (https://www.braverybottles.blogspot.com) as well as the ‘Bravery Bottles’ Facebook Page (https://m.facebook.com/katiefantblog/). 

The prizes are as follows:

• Netflix subscription gift card
• Kindle subscription gift card
• Spotify subscription gift card

To enter, simply go to www.paypal.me/braverybottles, enter the amount of the cost of ticket(s) you’d like to purchase, and keep checking the amount of tickets left before the randomised draw! 

Thank you to each and every person who contributes!

TICKETS LEFT TO SELL: 0

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And the winners are........

GUEST FUNDRAISING : Megan Whitehouse - Secret Message Capsule Keyrings

This is another fundraiser from Megan; a valued member of the team.  

The official ‘fundraiser’ has now finished but keyrings are still available for purchase in the ‘shop’. 

PUBLIC FUNDRAISING CHALLENGE

SMARTIES TUBE CHALLENGE - Ends August 31st

Ths first of the public fundraisers is the ‘Smarties Tube Challenge’. This is a well-known project, but for those who haven’t heard of it, all you have to do is buy a hexagonal tube of Smarties - the hexagonal tube is essential, being the focus of the competition. Once you’ve eaten (and hopefully enjoyed!) the chocolate, all that’s left to do is fill the tube to the top with 20ps. A single tube holds £12, so if only 5 people took part, £60 would be raised, which is just incredible! So please get involved so we can raise as much as possible (don’t forget to tell your family and friends about it and get them involved too!).

Easter Fundraiser 2018

As you all know by now, I have set up a project - 'Bravery Bottles' (www.braverybottles.com) - for those living with any type of chronic illness, anywhere in the world. In its simplest terms, it is a positivity project aimed at redefining the common definition of 'bravery' within the medical community, by way of awarding yourself for facing fears, completing acts, or overcoming obstacles that are outside of your comfort zone; whether others would agree that it's 'brave' or not.

The project is mostly self-funded, with the added help of generous donations from friends, family, and strangers alike through the project's JustGiving Page (https://www.justgiving.com/crowdfunding/katiefant), competitions held online by participants, and events that I've held myself.

However, the amount of applicants to the project has far exceeded all expectations, and with the total number of applicants now edging close to 200 members, raising funds is crucial for the future of the project, and for it to be able to continue to run as it is currently.

So, this is the official announcement for my next fundraiser!

I am holding an online raffle to win an Easter hamper (see photo) in order to raise money for ‘Bravery Bottles’) 

The hamper, (arranged in a wooden box), consists of a ‘Build a Bear’ rabbit soft toy with a carrot outfit, a pair of rose gold earrings and matching necklace, various crafts and hobby related items (including seeds and a small watering can), multiple Easter gifts, and a whole array of Easter treats.

If you would like to enter, I will be selling ‘virtual tickets’ from now, until Easter Sunday (1st April). Tickets cost £2 each (there is no limit to the amount you wish to purchase), and all payments are to be made via PayPal (which anyone can use as long as you have either a PayPal account, or a credit/debit card that you can use to pay with). Once successful payment has been made, I’ll be in contact with your raffle ticket number(s), so please don’t forget to leave your name & a method of contact (either email or mobile phone number).

The direct link to make a payment is www.paypal.me/braverybottles

Please don’t hesitate to contact me with any problems and I’ll be more than happy to assist you.

Thank you so much, as always!

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The winner of the Easter Raffle was Melanie Venables - congratulations!

              

BB Participant Fundraising: Megan Whitehouse - 'Guess the name of the Bear'

Have got an extra special 'thank you' to make to Megan Whitehouse, who is a participant of Bravery Bottles, having multiple chronic illnesses herself. 

For the past couple of weeks, Megan has been selling 'names' for a 'Guess the name of the bear' challenge, all money raised in aid of Bravery Bottles. Megan chose the teddy and it’s name in advance (which only she and I knew!), and she came up with a list of 40 names; the real name obviously included in that list. After uploading photos of the bear (in its own wheelchair too!), she published the list of names, and sold each ‘name’ for 50p. Once all 40 names had been sold, Megan then announced the real name of the teddy - and the person who had paid for that name was the winner, and has been sent the bear & wheelchair as the prize.

Megan organised the fundraiser completely on her own, exclusively for the purpose of fundraising for the project. As the project has grown, it has needed increasing amounts of money invested into it. I’ve had so many generous donations on top of the couple of fundraising events that I’ve held - and I’m so grateful to everyone who has helped/donated in any way. However, the project is becoming more and more well-known, which means more people signing up to be part of it (which is incredible!). As a result though, the more people participating, the more money required - for stock, supplies, postage and shipping fees, awards, printing, admin fees etc., all essential to keep the project up and running, and running in the same way as when it was created; free of charge to any person, with any chronic illness, anywhere in the world.

It’s thanks to Megan, and other members who are in the process of holding/organising fundraising activities like this one, that the project has become as successful as it has. There are so many people who want to contribute to the project, but are simply too unwell to attend the events that I hold or to hold events themselves, so raising funds online through competitions and draws like Megan’s, means that more and more chronically ill people are able to sign up and benefit from a project that rewards the bravery they undoubtedly show, as a result of the challenges that come with having a lifelong illness.

Megan - thank you so much for your fundraising. You’re an asset to the project and I’m so grateful for organising and holding the event and for the money you raised as a result. Congratulations too to Alex - the winner. The bear’s name is Cookie, and I’m sure will be well looked after in its new home🙂

Design a bag competition

The ‘Design a Bag’ Competition gives all members a change to create a design, either by hand or digitally,  and receive that design on a bag (whether you win or not), and the prizes for the winner and runner up  come on top of this. 

The competition is optional. 

There are a number of rounds involved from the initial submission, to finding an overall winner, which are detailed below:

Stage 1: - participants to submit their designs.

Stage 2:  - All submissions have been uploaded and published, open to anyone to purchase. Out of the 20 designs, only 8 will continue into stage 3, so participants will be encouraging whoever they can to purchase their designed bag!

Stage 3: The 8 finalists will then have their designs subject to a public vote; the 4 designs with the most votes at the end of this stage will technically all have 'won', but there is a final stage to determine which place, and which corresponding prize they have won.

Stage 4: This final stage, as mentioned before, is to order the winners and award the prizes. For this to happen, the 'shop' will re-open for the final time and for

 the final chance to have people put in orders for your bag. Running alongsidethis will be another vote this time only for other members of the project. 

The amount of purchases from round 2, combined with the public vote in round 3, add

to

the number of final purchases and private votes in round 4, will determine what each person will win.

THE PRIZES ARE:

All 20 entrants, regardless of the amount of sales made, will receive a bag with their design printed on it, as a token gift for entering,

8th, 7th, 6th & 5th place, on top of receiving their bag, will get a framed photo of their design with a certificate, bonus charm, and 'BB Bargain bag' (necklace, suction hook & bead pot) - usually available in the BB shop.

4th, 3rd, 2nd & 1st place = designed bag, ornamental heart, personalised keyring/necklace, and a bonus charm

PLUS:

4th PLACE - 6-month magazine subscription

3rd PLACE - English Tea for 2

2nd PLACE - Makeover and Photoshoot

1ST PLACE = 4 TICKETS TO 'CRUFTS', WITH HOTEL AND BREAKFAST INCLUDED

So, to all participants - good luck!

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Results:

Congratulations to everyone who submitted a design and thank you for getting involved in the competition regardless of the results. All submitted designs are below:

 

In stage 2, the designs were whittled down to the top 8:

  

A final opportunity to purchase the remaining designs, plus a vote by BB members revealed the winners* (whose bags you can still buy in the Etsy shop:

3rd place: Hayley Tackett

Prize: Selection of tailored prizes 

Final product:

Joint 2nd place: Nicole Gray

Prize: Makeover and photoshoot

Final product:

Joint 2nd place: Rosie Powlesland

Prize: Annual English Heritage Membership

Final product:

1st place (winning design): Alley Daley

Prize: Night before in a hotel + breakfast, and 4 tickets to the annual Crufts Dog Show

Final product:

*PLEASE NOTE: Some prizes have changed/been adapted for a variety of legitimate reasons.

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On the 11th March, Alley went to Crufts Dog Show - some of the photos are below (there were too many to include them all!)

Doughnut Sale Fundraiser

For the staff and students at Blackfen School for Girls - my next fundraiser in aid of Bravery Bottles is at the end of this month; 29th January. I’ll remind you again closer to the time, but put it in your diaries; I’d love to see you all there!

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This is just a huge “thank you” to everyone at Blackfen School who came to my doughnut sale last week, or donated some money, in aid of ‘Bravery Bottles’.

The support I always get when I hold an event at school is phenomenal - the students just want the food; completely understandable and relatable from charity events that were held when I was in their position! But combined with the staff who know me, or know of me through mum, or who are interested and willing to learn more me/what I do, the final result is always one that makes a huge difference to the project.

It’s really hard to gauge the amount of food to bring to a fundraiser - especially at school. You can’t ever tell how many girls will turn up, how many will want to buy what you’re selling, how many students bring money to school, whether they’ll still be hungry after only just having their lunch etc etc but, in general, at the end of each 50 minute event, there’s very little that hasn’t sold, but that’s after I’ve sent my loud-mouthed, known by everyone, scary, bossy mum round to sell whatever is left at a discounted price!

When I was buying the doughnuts this time I was completely stumped by how many to buy; trying to guess how many teenage girls would be interested in buying £1 doughnuts on their lunch ‘hour’ is harder than you’d think.. I was trying to work out in my head how many, realistically, I’d sell. My estimate? 100. Reality? Closer to 1000! This sale was by far the quickest I’ve ever held. In less than 15 minutes, I’d completely sold out, leaving a queue of girls doughnut-less and disappointed, but the ‘Bravery Bottles’ fund up by £140 - an incredible amount raised. 

This fundraiser taught me a couple of valuable lessons: 1) Doughnuts are VERY popular, but 2) they sell out VERY fast. So, in the future, I’ll regularly be having ‘doughnut sales’, the only difference being that I make sure I’m armed with a lot more than 100 doughnuts!

Christmas fundraiser 2017

On Monday 11th December, as you would have known if you see my posts regularly, I held a ‘Christmas Fundraiser’ at Blackfen School, all proceeds going towards starting off my ‘Bravery Bottles’ Project. 

As well as the food (cakes, cookies, biscuits, chocolate, lollies) which were for sale, I’d also spent the past few weeks making extra bits to sell, such as baubles, greeting cards, badges, reindeer food and other decorations. 

Altogether, I raised £200.50 which is absolutely incredible considering I only had just over half an hour ‘selling time’ during the lunch break, and I’m so grateful for the generosity of the staff and students at Blackfen. 

I’d also like to individually thank Mr Brown, for letting me hold the event at school in the first place, the caretakers for help with equipment etc., and Mrs Taylor for help with setting up and selling too; thank you all. 

A special thank you of course to my mummy, Mrs Keenan, for being her usual bossy self, which made everything, from the preparation at the very beginning, until leaving school after the event, and everything in the middle (including pushing me around school in a wheelchair), run as smoothly as it possibly could have done, and for being part of making the event the success it was. 

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On Monday 11th December, as you would have known if you see my posts regularly, I held a ‘Christmas Fundraiser’ at Blackfen School, all proceeds going towards starting off my ‘Bravery Bottles’ Project. 

As well as the food (cakes, cookies, biscuits, chocolate, lollies) which were for sale, I’d also spent the past few weeks making extra bits to sell, such as baubles, greeting cards, badges, reindeer food and other decorations. 

Altogether, I raised £200.50 which is absolutely incredible considering I only had just over half an hour ‘selling time’ during the lunch break, and I’m so grateful for the generosity of the staff and students at Blackfen. 

I’d also like to individually thank Mr Brown, for letting me hold the event at school in the first place, the caretakers for help with equipment etc., and Mrs Taylor for help with setting up and selling too; thank you all. 

A special thank you of course to my mummy, Mrs Keenan, for being her usual bossy self, which made everything, from the preparation at the very beginning, until leaving school after the event, and everything in the middle (including pushing me around school in a wheelchair), run as smoothly as it possibly could have done, and for being part of making the event the success it was.