Category: Latest News

Live streaming of the 4^th International Alpha-1 Patient Congress will begin at 9 a.m. local Barcelona time (3 a.m. EST), from the Hilton Diagonal Del Mar. You will be able to view the conference from the beginning at any time after it begins.

View the Congress as it happens here

About the 4^th International Patient Congress:
The 4th International Alpha-1 Patient Congress and an international Research Conference on Alpha-1 Antitrypsin Deficiency (Alpha-1) will be held in Barcelona, Spain, April 11-13, 2013.

The event will mark the 50th anniversary of the discovery of Alpha-1 in 1963 by Carl-Bertil Laurell and Sten Eriksson. Eriksson, who was a young physician and researcher in Malmo, Sweden, when he and Laurell reported the discovery, will attend the anniversary event and be honored for his achievement. Topics such as augmentation therapy, access to care, and awareness and testing will be discussed. Download the EVENT PROGRAM.

More information about the Congress:

www.alpha-1foundation.org/50years

The stories of John (from the United Kingdom), Jenni (from Australia), Hans (from Sweden) and Caroline (from Belgium) are unique, but they also share many similarities.“Whilst it is becoming apparent that the younger generation of medical
professionals have heard of Alpha-1, the vast majority seem to still be unaware of the condition,” explains John Mugford, a 61-year-old Alpha from Milton Keynes, United Kingdom.

Four fabulous nurses from Southend Hospital will be hiking Hadrian’s Wall (84 miles in 6 days) in June raising funds for charities

Leigh Curtis, one of the 4 nurses whose husband suffers with

Please support Leigh by donating to her JustGiving page:

Lincoln Mum Emma Smith, member of the Alpha-1 UK Support Group, is celebrating after reaching the finals of the MAD Blog Awards, a national awards programme celebrating the fast-growing world of parent blogs. Please visit Emma’s website “My Little 3 and Me” Readers can vote for Emma’s blog in the MAD Blog Awards (Best Craft Blog)

A widow who lost her husband to a rare genetic disorder is campaigning for awareness of the illness to be raised. Charlotte Goode, 37, from Clayton-le-Woods, near Chorley, lost her husband Stuart to Alpha-1 Antitrypsin Deficiency in August 2009. Now, the mum-of-two, is urging people to sign a petition calling for the establishment of a specialised service for Alpha-1.

The online petition has been launched by the Alpha Alliance and Charlotte is backing it following her family’s experience.

Full Story…..

Hi, My name is Charlotte and I lost Stuart, my husband, to Alpha-1 Antitrypsin Deficiency in August 2009. He was 36 when he died. He was diagnosed 2 1/2 years earlier. Up until his diagnosis he had lived a happy and healthy life although he was very ill shortly after he was born. His illness was painful, stressful, confused and his treatment extremely poorly managed. Earlier diagnosis could have prevented his death or at least prolonged his life. Stuart was ignored by doctors, letters were lost and he had to ‘project manage’ his illness himself. Stuart leaves behind two sons, they were 3 and 1 when he died. Our eldest son, Bobby, is now 6.

Read his story as he remembers what happened to his daddy and please sign the e-petition.

A NEWQUAY mother has begun a fundraising mission to help raise both awareness and funds for a rare disease. Gemma Masters held a charity open-mic night in Porth last Thursday evening in a bid to raise vital funds for Alpha-1 UK Support Group. Around 30 people attended the event which also helped raise awareness of Alpha-1. Gemma said: “Only 5% of children show symptoms as a child. As a result of it, Evie gets recurrent chest infections and suffers poor weight gain. We have been battling to find out what is wrong with her since she was born seven years ago. It apparently takes seven years to detect but, even though you are born with it, people don’t think to test for it because it’s so rare.”

Full Story:-

Alan Lyons and his wife Claire will be taking part in this charity fundraiser for Alpha-1 and other local charities on Sunday 7th April. Alan is eldest son of Joe Lyons member of this group. Please support Alan and Claire by donating through “The Lincoln Friday Club Website” This event supports a number of charities and fund raising will be through PayPal. If anyone would like to sponsor them through PayPal please mention them by name when making the donation to ensure the Alpha-1 cause is recognised.

The Alpha-1 Alliance is campaigning for a highly specialised service within the NHS for patients with severe Alpha-1 antitrypsin deficiency. We’re calling on the NHS to set up three or four specialist Alpha-1 centres in hospitals across England that would allow patients prompt access to specialist clinicians and treatment. So far this year we’ve been focussed on raising awareness in Parliament about the campaign and the unmet medical need of Alpha-1 patients. We also recently met with NHS officials to find out more about the process for securing a specialised service.

Parliamentary support for the campaign
In January representatives from the Alliance met with four Members of Parliament (MPs) in Westminster from across the political spectrum. This allowed us to help improve politicians’ understanding of the condition and what needs to be done to ensure patients have better access to treatment and specialist clinicians. Mark Pawsey MP (the Conservative MP for Rugby) has a constituent with Alpha-1 and has been championing the campaign within Parliament.

Reform of the NHS
The NHS is currently undergoing a considerable amount of structural reform which has meant there has been significant uncertainty about the process that would need to be undertaken in order to set up a new specialised service for Alphas. Previously a body called the Advisory Group of National Specialised Services (AGNSS) would have advised the Government about whether or not to nationally commission a new highly specialised service. However, from 1st April this responsibility shifts to the new NHS Commissioning Board who will make all future decisions on specialised services. Potential future access to augmentation therapy for Alphas will need to be looked at separately by a NICE assessment. 

What can you do to support the campaign?
For the campaign to be successful it’s crucial that Alphas make their voices heard and let Government know why it’s so important that patients can access a specialised service within the NHS. We’re currently undertaking a survey of the views and experiences of Alphas and their families which we’ll use to write a report that will be presented to MPs and Peers at an event in Parliament later this year. Please share your views with us by completing the online survey:-

We’ve also set up a petition on the Government’s e-petitions website calling for the establishment of a specialised service for Alpha-1. The petition now has over 1,000 signatures, and if we can reach 5,000 signatures it will be one of the top 10 petitions to the Department of Health. We’re calling on all Alphas to sign the petition and circulate it to everyone they know to help us demonstrate the strength of feeling behind the campaign, and the need to provide specialised treatment for Alphas within the NHS:-

About the Alpha-1 Alliance
The Alpha-1 Alliance includes the Alpha-1 UK Support Group, Alpha-1 Awareness UK and Alpha-1 Advocacy and Action and is chaired by Dr Ravi Mahadeva, representing the clinical community.

Pirate FM has learnt that a Newquay schoolgirl has spent her whole life in and out of hospital because of a rare genetic illness.

Seven year old Evie Masters has Alpha-1 Antitrypsin Deficiency.

It means her body does not produce enough of a protein that protects our lungs and liver from damage.

She suffers from chest infections and could end up needing a transplant in later life.

Mum Jemma says ten days after being born, little Evie went blue: “I was told she probably wouldn’t make it through the night. Her lung collapsed, she had pneumonia and she was in Treliske for the first six months of her life.

“If it’s not treated correctly it can lead to transplants. It’s at the back of my mind, because we don’t know what the treatment is or what her long term life expectancy is.

“When Evie is sick everything sort of stops – and it’s normally three weeks out of the month she’s ill for.

“But she always makes people smile. She doesn’t complain about being ill – she just gets on with it.”
 
Jemma has started a Facebook campaign called Squeezy’s Story; the name given to Evie by a nurse at Treliske because she is so small.

The campaign is hoping to raise awareness as well as money for better diagnosis and treatment in the UK.

At the moment, the closest available centres are in America.
Charity Alpha-1 UK Support Group is calling on local people to sign an e-petition to try to get that changed.

Spokeswoman Karen North says: “Not very many specialists in the country even know about Alpha-1 so it’s rarely tested for, rarely diagnosed and if diagnosed, there isn’t a treatment in this country available for it.”

Pirate FM News – http://www.piratefm.co.uk/news/latest-news/895865/mum-tells-of-battle-to-find-treatment-for-daughter/