Author Archives: alexwhitteker

RAISE FUNDS WHILE YOU SHOP – IT WON’T COST YOU A PENNY!

Before you click “buy” on that last minute FATHER’S DAY gift or your ANNUAL HOLIDAY INSURANCE, or even BOOKING YOUR HOLIDAY, did you know that whenever you buy anything online you could be collecting free donations for Haemophilia Scotland?

There are over 3,000 shops and sites on board ready to make a donation, including Amazon, John Lewis, Aviva, thetrainline and Sainsbury’s – it doesn’t cost you a penny extra!

It’s as easy as 1, 2, 3…

  1. Head to https://www.easyfundraising.org.uk/causes/haemophiliascotland/ and join for free.
  2. Every time you shop online, go to easyfundraising first to find the site you want and start shopping.
  3. After you’ve checked out, that retailer will make a donation to your good cause for no extra cost whatsoever!

There are no catches or hidden charges and Haemophilia Scotland will be really grateful for your donations.

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The Andy Gunn Band is coming to Leith

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Long time contaminated blood campaigner and Haemophilia Scotland member, Andy Gunn will be playing at Bar Brig in Leith on the 2nd of June.

You can support Andy by attending or by purchasing his music.

Today is World Haemophilia Day

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Glenda and Alex showing their support for World Haemophilia Day 2018

April 17 marks World Haemophilia Day. This year’s theme is “Sharing Knowledge Makes Us Stronger.”

The bleeding disorders community is filled with the first-hand knowledge and experience needed to help increase awareness, as well as to improve access to care and treatment. The WFH website has an extensive and informative resource base. http://elearning.wfh.org/

Another way of sharing knowledge is by meeting with others in our community. We organise a regular events programme which is FREE for members. It’s a fun and engaging way to make friends and share knowledge and experience.

To show support and raise awareness of bleeding disorders, landmarks across Scotland will be lit red. Haemophilia Scotland has received confirmation that these landmarks are are: Edinburgh Castle, Glasgow Science Centre, Horse on the M8, Jenners Department Store (Edinburgh), Melville Monument (Edinburgh), Ness Bridge, SSE Hydro, The Titan Crane and Marischal Hall (Aberdeen). Show your support and post photos on our Facebook page of you and your friends at the landmark. #WHD2018

 

See you at Landmark on July 14!

Our next Children and Families Event is at Landmark Forest Adventure Park in Carrbridge, on July 14 from 12:00pm-5:00pm.

Events are free for all members, and if you’re not a member already, all you need to do to join is fill in this simple membership form. There is no cost involved.

We will have lunch upon arrival and will have all afternoon on the roller coasters, waterslides and climbing walls for the serious adventure junkies. If you’re after something a bit more relaxing, there are optical illusions, an ancient forest to wander through and a butterfly house. There’s something for everybody.

Looking forward to seeing you there!

>>BOOK YOUR PLACE NOW


In the recent edition of The Wire, the date for this trip was incorrectly noted as July 17 so apologies for any confusion.

 

Joint Campaign Meeting in Edinburgh on April 21

Joint Campaign Meeting
WHERE: Apex Haymarket Hotel
WHEN: April 21, 11:00am-1:00pm

Haemophilia Scotland and the Scottish Infected Blood Forum are jointly hosting a campaign meeting for anyone interested in the contaminated blood and blood products disaster in Scotland.

We will be discussing the Langstaff Inquiry consultation on Terms of Reference.

It would be helpful if you considered the below questions before attending the meeting so we can have a discussion:

  • On what time period or periods should the Inquiry focus?
  • Do you agree with the provisional view of what should be covered? (Please provide any additional views on what you think the Inquiry should consider.)
  • Is there any type of evidence, such as documents, communications or expert reports that you think is essential for the Inquiry to obtain?
  • Should the Terms of Reference include consideration of the care provided, and the response of governments across the United Kingdom and overseas? If so, are there any particular areas the Inquiry should focus on?
  • Do you agree that the Inquiry should seek these individual responsibilities and make recommendations?
  • Is there anything else you would like to add?

The venue, Apex Haymarket Hotel is located near Haymarket Station and is accessible by train, bus or car. For more information on the venue, visit their website.

>>BOOK YOUR PLACE NOW

Teen Sailing Trip: July 29 – August 3

The Challenger

 

TEEN SAILING TRIP, July 29 – August 3. Portsmouth, England.

This is an amazing, FREE opportunity open to teenagers aged 12+ with a bleeding disorder. 

DEADLINE TO APPLY: APRIL 20

About the trip:

On July 29, we will fly from Scotland down to Southampton and stay the night on the Challenger ship in Portsmouth. In the morning of July 30, we will begin our voyage and set sail from Portsmouth to Cowes, Poole, Weymouth and Lymington before returning to Portsmouth on August 3.

Throughout the trip, we will sail in the mornings and sightsee and explore around the different ports in the afternoon and evening.

As described on the Tall Ships website, “As well as learning to sail, you will be fully integrated into the crew, responsible for running the vessel 24/7 which includes learning to navigate and read charts, as well as assisting in the galley and helping to maintain the vessel. You will gain so much experience from sailing with us, not only will you leave with new peers and buckets of enthusiasm but you will also have more confidence in yourself, learn how to take on a challenge and overcome hurdles, be willing to take on new responsibilities and hopefully leave with a passion for sailing.”

We will fly back to Scotland in the evening of August 3.

The nearby haemophilia centres in Portsmouth, Cowes, Poole and Weymouth know we are doing this trip and there will be two haemophilia nurses and specialist youth workers onboard.

>> To apply, please email hello@haemophilia.scot BEFORE APRIL 20 and in no more than 300 words, explain why you would like to go on the trip and the impact it will have on your life.

If you have any queries, please email alex@haemophilia.scot. We will organise an event closer to the time to discuss any queries parents may have.

 

About the Challenger boat:

  • Name: CHALLENGER 3
  • Class: C
  • Nationality: UK
  • Year built: 2000
  • Home port: Portsmouth
  • Rig: Bm Cutter
  • Height: 27.54 m
  • Length: 21.99 m

The Tall Ships Challenger Fleet yachts are 22 metre (72 foot) steel hulls built in 2000 and designed to race around the world ‘’the wrong way’’ (against prevailing wind and tide), so are exceptionally strong and seaworthy.

There are four yachts in the Challenger fleet and they are operated by the Tall Ships Youth Trust. The charity, which celebrated its 50th anniversary in 2007, also operates the brig Stavros S Niarchos, a catamaran and a ketch.

The Challengers, which can each accommodate a crew of up to 18, previously took part in the Round the World Challenge races. They are modern, safe, purpose-built yachts, perfect for sail training and coastal adventures. With a Bermudan Cutter Rig, the Challengers can sail with a mainsail, two headsails and a spinnaker. They have a large cockpit, sturdy decks and a state of the art navigational suite.

More information on Tall Ships can be found at www.tallships.org

Let us know if you would like to attend the WFH Congress in Glasgow, May 20-24.

Don’t miss out on a once-in-a-lifetime opportunity!

The 2018 WFH Congress is coming to Glasgow.

This is the first time that Congress has been hosted in the UK and is a special and unique opportunity for you to attend this worldwide gathering. It’s the largest international meeting for the global bleeding disorders community!

You will meet industry experts, hear the latest from the pharmaceutical companies, meet other people from the international bleeding disorders community and so much more.

We think this is something you would not want to miss!

We currently haven’t got a budget for the registration costs or accommodation costs of attending the Congress. We ask if you need a bit of financial assistance and if you would like to attend for the whole of Congress, or if you are thinking about attending, please let us know by completing the below form by March 21. We can’t promise anything, but we are hoping to get funding so we can get as many people attending as possible.

This is an opportunity not to be missed!

 

Make a difference for women at Congress

The Women’s Booth at the World Federation of Haemophilia Conference in May this year is, as some of you know, being hosted by Haemophilia Scotland.  Many of you are already aware and participating in our ongoing quilt project which will be displayed there.

Working in partnership with Glasgow Haemophilia Centre, we thought it would also be a nice gesture to recognise that no matter how little we have, some women and girls in the world have much less, particularly of the basic things we come to take for granted.

In many of the international communities, item such as pants, socks, sanitary wear, deodorant, shampoo, toothpaste, toothbrushes etc are luxury and commonly non existent items for many women.

We would like to collect some of these items and make them available to anyone who needs them during the conference and anything unused thereafter be sent to women and girls in Malawi and Kenya as part of Haemophilia Scotland’s ongoing programmes in these countries.

If you can and would like to donate any of the items mentioned above (or any other small items you can think may be useful) which could go into a small “goodie” bag for these girls and women, these are being collected at the Glasgow Haemophilia Centre and the Haemophilia Scotland Office.

Let’s make life a wee bit more comfortable for these girls and women with a great Scottish welcome!

If you wish any further information regarding this, please contact Nancy Brodie at the Glasgow Haemophilia CCC on 0141 211 5127.

 

Today is Rare Disease Day

The Haemophilia Scotland team showing their support for Rare Disease Day 2018

A rare disease is any condition which affects less than 0.1% of the population – that is 5 or fewer people in every 10,000 people.  All the bleeding disorders which affect our members are rare conditions.

There are thousands of recognized rare diseases, with more being identified every year. Research shows that 1 in 17 people will suffer from a rare disease at some point in their life.

Haemophilia Scotland works with individuals and families with a wide range of bleeding disorders.  Although there are around 2,500 people in Scotland with a diagnosed bleeding disorder, there are an estimated 300,000 people with one of the 6,000 to 8,000 recognised rare diseases.  So, we may be small on our own but together we have a very loud voice indeed! “Looks like rare’s not so rare.”

 

Glasgow Centre’s “Girlie Day Out” a huge success

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Glasgow CCC held the “Girlie Day Out” event on Saturday (24th February) in the St Mungo Museum.  It was a great afternoon organised for female patients, carers of people with bleeding disorders and any of their family members.

The day was well attended and started with a bit of lunch and some very short informative discussions around:

  • Women and girls bleeding problems (Dr Catherine Bagot, Consultant Haematologist, Glasgow)
  • Talking Red (Lynn Wild, Talking Red Ambassador)
  • Women and Girls Malawi and Kenyan Experience (Susan Warren, Honorary President Haemophilia Scotland)

Following these discussions the afternoon went on to some fun activities – manicures, henna tattooing, decoupage… finishing the day with tea, cake and bollywood dancing!!

Feedback from the event has all been positive and was evidently stacks of fun for all who attended!!!

A big thank you to all staff at the Glasgow Centre and the speakers who gave up their Saturday for this event.

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