WAYS TO GIVE TO THE ALKAPTONURIA SOCIETY
Mission Fish
We are now registered on Ebay, so if you are a regular EBayer you can now donate a percentage of your profits to the Alkaptonuria Society! You’ll find our page here: http://donations.ebay.co.uk/charity/charity.jsp?NP_ID=25824
Justgiving
If you are taking part in a sponsored event, why not raise money for the Alkaptonuria Society by creating a page through JustGiving? You’ll find our charity page here: http://www.justgiving.com/alkaptonuria
Will Donation
We have now set up a process whereby people can donate to the Alkaptonuria Society via their will. If you are interested in making a will contribution, please click here to download the form.
We are very grateful for all contributions, large or small. Your donations will go a long way into helping support our research into a cure for Alkaptonuria.
PLEASE GIVE TO THE ALKAPTONURIA SOCIETY
Nick Sireau
Please give to the Alkaptonuria Society! Alkaptonuria
is a debilitating and rare genetic disease that affects the cartilage
and bone, slowly destroying them. Adults with the disease often have to
undergo major surgery, hip, shoulder and joint replacements, and suffer
from heart disease, eyesight damage, kidney illnesses as well as many
other problems.
The disease is due to a missing enzyme, which means that sufferers
cannot breakdown a substance known as homogentisic acid. This
accumulates in their body at more than 2,000 the normal rate,
destroying bone and cartilage.
There’s research going on into Alkaptonuria, as this website shows. But
we urgently need more funding for this and to enable patients to attend
the research centres.
To give, go to: www.justgiving.com/alkaptonuria/donate
Please give generously to the Alkaptonuria Society. Regular donations
are particularly welcome as they mean that we can plan more effectively
from a stable financial basis. Even a few pounds or dollars a month can
help!
I found out about Alkaptonuria when my first child was six months old.
A few days after his birth, we started noticing that his nappies were
turning dark red. We contacted an emergency doctor urgently, because we
thought it was blood, but tests showed that it wasn’t.
The doctor’s initial reaction was that my wife
was eating too much red cabbage and that this was going through the
breastmilk into the baby boy and into his urine. Sounded ridiculous to
us! Fortunately, our family doctor was much
wiser and sent off for some urine tests. These took a few months and
came back positive for Alkaptonuria. We’d never heard of the disease
and our first reaction was to search the internet for information. What
came back alarmed us: joint and cartilage damage, heart illnesses, eye
problems, and much more.
So imagine our dismay when our second child, also a boy, was born with Alkaptonuria. We are understandably very worried.
Fortunately, the worst damage won’t start happening for some years. At
the moment, both boys are happy and play around like normal little
boys. But my heart sinks when I think of the homogentisic acid building
up all the time in their body at 2,000 times the normal rate because
they’re missing an enzyme.
That’s why the work of the Alkaptonuria Society is so important. It’s
working to increase awareness and understanding of the disease and find
money for research.
Please give generously to our work by going to this web page:
www.justgiving.com/alkaptonuria/donate
Robert Gregory, Manager Alkaptonuria Society
Hi everybody, I am appealing to you for funding for this site.
As you may know, this site was created by the
Alkaptonuria Society after obtaining a grant from Orphan Sweden. This
was a one-off and the grant has now been used up to build and maintain the
site. If we want to continue this site we need funding from you and anyone who is willing to fund us. This is the
only site in the World for this condition and we have enquiries from as far
away as New Zealand and even Hawaii... Not just from sufferers but also
from medical professionals trying to find out more about the condition.
This is a devastating disease. It's not a new disease; there are
sufferers out there who have the disease but have not been diagnosed.
And the situation for these people is going to get worse as they get
older. We as a Society are trying to find out more about the condition
and are gathering information from the people who suffer with this
disease.
I would ask you to think of the families of the people with this
disease think of the sufferers of this disease. I have the disease, my
sister has the disease. We have evidence of children with this condition
and it runs through families. I would ask you to give what you can. I
contribute a regular payment and I know other trustees of the Society
do the same on a regular basis to keep this society running. Give today
- give what you can. any amount, a one-off payment or a regular amount,
Thank you from the Society... go to the link in the below article.
Please give us your unwanted old and new foreign notes and coins!
Did
you know that there's £95 million in foreign notes and coins lying
around people's houses? What a waste of money that could be put to good
use!
So why not donate yours to the Alkaptonuria Society today! Look around
your house and pick up all your new and old foreign notes and coins,
such as French francs, Dutch guilders, Spanish pesetas, and old English
bank notes and then send them to us.
Yes, that's right – we'll take old and new foreign notes and coins.
Every last penny will help us care for people with the rare genetic
disorder Alkaptonuria.
We have a special arrangement with our bank to collect these old and
new foreign notes and coins and convert them to pounds. We are trying
to raise a million pounds to open the first centre in Europe dedicated
to the disease Alkaptonuria. We can only do this with your help. Donate
today.
So please start rummaging around your house!
Please send the notes to
Clare Molyneux,
C/O Department of Clinical Biochemistry and Metabolic Medicine
Royal Liverpool and Broadgreen Hospitals
Prescot Street
Liverpool
L7 8XP
UK
Or
Robert Gregory
Manager Alkaptonuria Society
12 High Beeches
Court Hey
Roby Road
Liverpool
L16 3GA.
UK
Tel 0151 737 1862
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