“Don’t quit smiling, great things can still happen”

 

 

When our small admin team in the UK found out

that one of our members was planning a

fundraising run, we were delighted. What made

us smile even more was the fact that the sunny

young woman organising it was in Washington,

USA.

 

The run took place in Osprey Park, Sultan,

Washington on Sunday 8th March and few

thousand miles and a considerable time distance

didn’t stop Amadita telling us all about it.

 

Amadita’s mother Rene has the rare degenerative

condition Superficial Siderosis. It’s not an easy

condition to deal with, even if the patient is on the

experimental drug Ferriprox because the

symptoms encroach slowly on the person’s life

and independence, with no assurances about the

future.

 

But Amadita’s positivity shines through.

 

I was interested in knowing what motivated her to

organise the event. “I wanted to do something

helpful and in this way I didn’t feel so helpless.”

She went on to say that was her way of getting

involved and doing something practical, which

isn’t always easy when you are supporting

someone with a challenging illness.

 

Amadita also enjoyed the help she got from others: “Without the love and support I would never have been able to organise this event.” The support came in the form of donated prizes, raffle tickets, concessions and of course fellow runners and friends.

 

“The whole day was great, we had smoothies, cookies, sunshine, semi-warm weather, runners, a raffle and we raised over $600 (or just over £400).”

 

When I asked her what advice she would give to anyone else thinking of organising a fund raising event, she had some helpful comments to make. “Plan ahead, give yourself plenty of time, ask questions, be flexible and even when it gets a bit tough, don’t quit.” She went on, “this is for great people and will help them in great ways, and even if the first event isn’t great, that means there’s nowhere to go but up.” I like her way of thinking.

 

The best part of the day? “Getting to meet another individual diagnosed with SS and also seeing all the people who came to participate.”

 

And how does she feel about the future? “It’s not over yet, the road will be tough but great things can happen! Let’s give the person diagnosed the strength they need.” Whilst she admits that she doesn’t know what the future holds, she sees no other outlook other than optimism: “Everything happens for a reason and we just have to play the cards that we’re dealt.”

 

It would seem she is unwilling to waste energy on being negative and I like this idea.

 

“My hope is that the same love and support shown to me is what we can show to other people diagnosed with SS”, which is the whole point behind The Silent Bleed and why we love having people like Amadita working with us.

 

“Don’t quit smiling, great things can still happen!”

 

A pretty sound mantra in our opinion.

 

How can you get involved?

 

  • Organise an event of your own. To give you some ideas, we’ve got a couple of charity runs and a craft fair in the pipeline for later this year. Drop us a line if you would like some help or advice.

  • Buy a bag of wrist bands. At £10 for ten (plus p&p) they’re a great way to raise money with family, friends and your local community with minimal effort.

  • Make a donation. Our work depends on the generosity of people like you and it’s really easy through Paypal or send us a cheque. Every little does really help.

 

AJF

Amadita Lopez-Moss and friends run for Superficial Siderosis

Amadita also enjoyed the help she got from others: “Without the love and support I would never have been able to organise this event.” The support came in the form of donated prizes, raffle tickets, concessions and of course fellow runners and friends.

 

“The whole day was great, we had smoothies, cookies, sunshine, semi-warm weather, runners, a raffle and we raised over $600 (or just over £400).”

 

When I asked her what advice she would give to anyone else thinking of organising a fund raising event, she had some helpful comments to make. “Plan ahead, give yourself plenty of time, ask questions, be flexible and even when it gets a bit tough, don’t quit.” She went on, “this is for great people and will help them in great ways, and even if the first event isn’t great, that means there’s nowhere to go but up.” I like her way of thinking.

 

The best part of the day? “Getting to meet another individual diagnosed with SS and also seeing all the people who came to participate.”

Get Social with us!

Our Facebook group is a kind and compassionate space for people with superficial siderosis to share the ups and downs of everyday life - search 'superficial siderosis - the silent bleed' and send a request to join.

  • Facebook Social Icon

(c) The Silent Bleed 2019

Registered as a Charity in England and Wales since 2016

Text reproduction and sharing

 

The reason we exist is to make our voices heard about superficial siderosis, so please feel free use the text on this site as you need to - all we ask is that you clearly mention us as the source and that you drop us a donation. Please ask permission to use photographs because many of them feature our members and it's only fair to ask them first. Many thanks.