Jenni Nankervis took part in The Melbourne Age Run on Sunday 21st July to raise awareness of Alpha-1 Antitrypsin Deficiency and to raise funds for the Alpha-1 Association of Australia (AAA)

Here is what she said on the day:

Well done to Jenni and all those who took part.

Please visit Alpha-1 Association of Australia:-

 24th July, 2013

 Alpha-1 Alliance – campaign update

The Alpha-1 Alliance is campaigning for the establishment of a highly specialised service for Alpha-1 patients.   As future patient access to a licensed augmentation therapy will be an integral part of this service, we warmly welcome the augmentation therapy clinical trial results recently presented by CSL Behring at the American Thoracic Society conference and their intention to apply for market authorisation in the UK.

CSL Behring has made a commitment to patients in the UK and has provided a donation in support of the Alpha-1 Alliance campaign. We are extremely grateful for this support which will allow us to implement our rigorous campaign plan for the next 12 months.  This will include a number of campaigning activities over the course of the next year, such as the development of a policy report, further meetings with politicians and a Patient Day in Parliament. 

We will be engaging with NHS England and the Department of Health in the coming months to further define the next steps of the process to secure a new highly specialised service, and will provide regular updates on the progress of the campaign. 

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.

 28th June, 2013

Charlotte is battling on in memory of her husband

Mum of two wants more known about Alpha-1 – Walking down a picturesque beach in Dorset, Charlotte Goode beamed at her doting husband and two beautiful boys. It is a fond memory that the young mother from Clayton-le-Woods replays over and over again. For just weeks later, the former Holy Cross High pupil was widowed. Her husband Stuart, 36, died from a rare genetic disorder Alpha-1 Antitrypsin Deficiency.

07th June, 2013 (Chorley Gaurdian – Natalie Banks)

The RAPID Trial demonstrates the effectiveness of augmentation therapy in slowing emphysema due to Alpha-1 Antitrypsin Deficiency. Results of the trial were announced today at a late-breaking abstract session at the international conference of the American Thoracic Society in Philadelphia. CSL Behring sponsored the trial, which randomly assigned 180 Alpha-1 patients to receive either the augmentation product Zemaira or a placebo for a two-year period.

Daddy’s Duck Day Wish Comes True

Two young brothers from Chorley will be hosting a charity duck race in memory of their late father, who passed away four years ago. 

Bobby Goode, aged seven, and Ted Goode, five, have teamed up with their friend Corey Coggins, four, from Wigan, who also lost his father in 2011. The boys want to use the event to help raise awareness of the illnesses which claimed both men’s lives.

The fundraiser will take place on Sunday 30^th June and will be held along the Leeds Liverpool Canal at the Wigan Investment Centre. It aims to raise awareness of Alpha-1 Antitrypsin Deficiency a disease which claimed Stuart Goode’s life at 36 and Bowel Cancer which took Ric Coggins aged just 33.

The friends, who met through their mothers at the Way Foundation (Widowed And Young) also hope the charity event will help raise funds for Wigan and Leigh Hospice, where little Corey Coggins receives support and guidance. The boys have named the fundraiser ‘Daddy’s Duck Race’.

Bobby and Ted’s mother Charlotte and Carrie, Ric’s widow, believe that earlier diagnosis could have prevented or at least prolonged their partners’ lives. Both men died in their 30s and had previously lived healthy lives.

Stuart passed away two and a half years after his diagnosis, at just 36. Charlotte says that his illness was both painful and stressful, whilst the doctors treating him knew little about the genetic disease he was suffering from. Ric was diagnosed at 32 and lost his fight just ten months later. The cancer went undetected, despite various tests, and sadly once it had been discovered it had already spread to his liver. 

Ted, Bobby and Corey are appealing to individuals and businesses to purchase a duck to take part in one of two races throughout the event. The ducks cost just £2 each for the family race, whilst ducks for the corporate race can be purchased by local businesses for only £25.

The races will take place between 12pm and 4pm, there will also be plenty of family fun on offer with fairground style events, charity stalls, a range of refreshments, music and much more. There will be 1^st, 2^nd,  3^rd, 4^th and 5^th place prizes for each race which the boys hope will be donated by local businesses.

Charlotte said: “Alpha-1 Antitryspin Deficiency, also known as A1AD or AATD, is an inherited, genetic condition that is passed on from generation to generation. It is a little known illness in the UK and most people have never heard of it. It is so important to Bobby, Ted and I that we make people aware of it so that other families don’t have to go through what we did with their daddy.”

Carrie said: “From the day he was diagnosed Ric wanted to raise awareness of the disease in order to prevent others going through what he had to. By fulfilling the boys fantastic idea of a duck race, we hope to raise as much awareness of bowel cancer as possible and honour Ric by carrying out one of his last wishes and keeping his memory alive.”

The ducks will go on sale from Friday 17^th May and will be available to purchase online at:

To keep up to date with the event and find out more about what will be happening on the day please follow @ DaddysDuckRace on Twitter or like on Facebook.

For more information about Bowel Cancer visit: http://www.haveigotbowelcancer.com/ and for Alpha-1 Antitryspin Deficiency: http://www.alpha1.org.uk/ Details about Wigan and Leigh Hospice can be found a: http://www.wlh.org.uk/

The Alpha-1 Project (TAP) today announced a $150,000 commission to Darrell Kotton, MD, to expand development of induced pluripotent stem cell (iPSC) lines created from tissue donated by patients with Alpha-1 Antitrypsin Deficiency (Alpha-1). Kotton is Professor of Medicine and Co-director of both The Alpha-1 Center and the Center for Regenerative Medicine at Boston University School of Medicine and Boston Medical Center.

The 4th International Alpha-1 Patient Congress and an international Research Conference on Alpha-1 Antitrypsin Deficiency (Alpha-1) was held in Barcelona, Spain, April 11-13, 2013. Delegates from 23 countries attended the event which marked 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, attended the anniversary event and was honored for his achievement.

The delegates considered awareness of Alpha-1 to be the most important need for the Alpha-1 communities in their countries. Access to care, especially augmentation therapy, was the second most important priority named. The need for an organized Alpha-1 community in many countries and the need for better communication between Alpha-1 communities worldwide were also major concerns of the Alphas at the Congress.

A big thank you to our Trustees Karen North and Bev Burroughs for representing the Alpha-1 UK Support Group at the event and a special thank you to the Alpha-1 Foundation and all the organisers who made this event possible.

Alpha-1 Patient Congress to stream live on web

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.

 

Leigh Curtis, one of the 4 nurses whose husband suffers with Alpha-1 has chosen the Alpha-1 UK Support Group as her charity.

Please support Leigh by donating to her JustGiving page:

20th March, 2013

Wife in Alpha-1 campaign bid – Lancashire Evening Post

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…..

 Bobby’s 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.

Jemma, Evie and Family Front Page News Newquay Voice

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:-

Mum Tells of Battle to Find Treatment for Daughter

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/

4th International Alpha-1 Patient Conference Barcelona, April 11th – 13th 2013

To commemorate the 50th anniversary of the discovery of Alpha-1 Antitrypsin Deficiency by Carl-Bertil Laurell and Sten Eriksson in 1963, Alpha-1 communities from around the world will take part in two major events in Barcelona, Spain.

Date: 12th -13th April 2013

Venue: Hilton Diagonal Mar Hotel, Barcelona, Spain

Organiser: Alpha-1 Foundation

Alpha-1 Antitrypsin Deficiency Mentioned in House of Commons

Alpha-1 Antitrypsin Deficiency (AATD) has been mentioned in the House of Commons, by Mark Pawsey, Conservative MP for Rugby. His question came as part of the “Business Questions to the Leader of the House” session on the morning of 6th December 2012.

Official transcript issued by Hansard 6th December 2012:-

Mark Pawsey (Rugby) (Con): I recently met my constituent, Stephen Leadbetter, who has suffered from lung problems since he was 14. He is now 22, and has recently been diagnosed as having alpha-1 antitrypsin deficiency. Stephen believes that if he had been diagnosed earlier, his health would not now be declining so rapidly. May we have a debate about raising awareness of this and similar conditions?

Mr Lansley: It is important that the Department of Health should continue to support research and development into rare genetic diseases, and we have protected the research and development budget in order to do so. We consulted on a rare disease plan, and published a summary of the consultation responses last month. Work is on track to produce a UK rare diseases plan by the end of 2013, which could help my hon. Friend’s constituent and many others.

The exchange between MP’s can be viewed at the Parliament TV Web Player minute marker 11:16 46 am:-

Alpha-1 Alliance Campaign Update

E-PETITION PLEASE SIGN / Alpha-1 Alliance (UK) launches e-petition to the Department of Health calling on the Government to nationally commission a specialised service for Alpha-1 so that patients can get the vital treatment and support they need.

The Alpha-1 Alliance’s campaign for a nationally commissioned specialised service for Alpha-1 antitrypsin deficiency, including access to augmentation therapy, is now well under way. The Alpha-1 Alliance brings together key Alpha-1 patient groups and clinicians to campaign for better services and treatment for Alpha-1 patients. The 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.

The Alliance is in the process of securing meetings with key officials at the Department of Health as well as meeting with Members of Parliament to raise awareness of the needs of Alpha-1 patients. We’ve also just launched an online petition to the Department of Health calling on the Government to nationally commission a specialised service for Alpha-1 so that patients can get the vital treatment and support they need. It’s really important that we get as many signatures as possible to demonstrate the strength of feeling about the need for specialised Alpha-1 services and we need your help to make this happen.

Please show your support for the campaign by signing our e-petition, then spread the word by forwarding the petition to friends, family and work colleagues. Don’t forget to post the petition on Facebook and Twitter too, if you use them. We currently need to reach 5,000 signatures in order to make it into the top 10 petitions to the Department of Health, and if we can get 100,000 signatures the petition has the chance to be debated in Parliament.

You have to be a British Citizen or normally live in the UK in order to be able to sign the petition. So, British Citizens living abroad would be able to sign the petition and it would count (which is why the petition provides a ‘Country’ drop down menu).

26 Mile Marathon Fundraising Swim raises money for Alpha-1 UK Support Group Charity

Congratulations and a big THANK YOU to Marianne Mullen for completing her Marathon fundraising swim.

Here is what Marianne had to say:

“I’VE DONE IT AT LAST!!!  🙂 I’ve Completed my 26 mile swim and survived! Thank you for taking the time to look at my JustGiving page and for all your generous donations. It has been a good journey with lots of kind encouragement.  I really have appreciated your support and your generous funds will play a big part in  helping raise awareness and finding medical solutions to this condition for future generations. You have all helped to make a difference.

Thank you x :)”

“As an ex international springboard & highboard diver I have led a very active lifestyle, so it was a big shock to discover that I should be affected by a condition such as this. Whilst I am still relatively fit (!), my intention was to complete a marathon swim over the summer months (26 miles in total). Without the Alpha 1 support group and ADAPT programme there would be no support structure or monitoring of this condition in the UK. Through their tireless campaigning, more is being found out about this genetic condition, and more GPs are becoming aware of it. The Alpha 1 support group relies on the generous donations of

20th September, 2012

A new collaboration based at the University of Cambridge will aim to discover and develop new medicines to treat liver disease.

The partnership, between the University and global pharmaceutical company GlaxoSmithKline (GSK), will build upon the work of researchers who have identified a molecular mechanism that plays a major role in the life-threatening liver disease that develops in a population of patients with a particular mutant gene.

 07th September, 2012

Alliance to campaign for better access to Alpha-1 treatment

The Alpha-1 community has formed an unprecedented alliance to campaign for better access to treatment for Alpha-1 patients. The recently established Alpha-1 Alliance will be campaigning for a nationally commissioned specialised service for Alpha-1 and for more awareness of the unmet medical need of Alpha-1 patients.

The Alpha-1 Alliance brings together the key patient groups for Alpha-1 in the UK, including the Alpha-1 UK Support Group, Alpha-1 Awareness UK and Alpha-1 Advocacy & Action. The Chair of the Alliance will be Dr Ravi Mahadeva, Clinical Director in Respiratory Medicine at Addenbrookes Hospital, who will be representing the Alpha-1 clinical community.

The Alliance will offer a platform for patients and clinicians to work and campaign together.  Dr Mahadeva said: “For a long time patients, families and carers have been waiting for better access to Alpha-1 therapy. We therefore strongly support the campaign for a nationally commissioned specialised service for Alpha-1, as it will allow for a more holistic treatment approach and provide the necessary infrastructure for future research in the disease area.”

As an initial part of the campaign, the Alliance will be meeting with key stakeholders to discuss the application process for a nationally commissioned specialised service and to raise the profile of Alpha-1 in Parliament. The Alpha-1 Alliance will provide regular updates to inform patients of the progress of the campaign and how they can get involved and support the activities.

Dawn Heywood-Jones, Trustee of Alpha-1 Awareness UK and member of the Alpha-1 Alliance, said: “We are pleased that the Alpha-1 community has finally joined forces to campaign for the common goal of better access to Alpha-1 treatment. It is of great importance that we speak with one voice to make our concerns and medical needs heard in the public policy arena. A nationally commissioned specialised service will not only provide better therapy for patients but will also end the current postcode lottery in access to treatment.”

Karen North, Project Co-ordinator at the Alpha-1 UK Support Group and member of the Alpha-1 Alliance, said: “The policy structure for the commissioning of specialised services is currently in a state of flux. However, we look forward to engaging with the Government to discuss a common approach for improving services for Alpha-1 patients in the future.”

Margaret Millar, representative of Alpha-1 Advocacy & Action and member of the Alpha-1 Alliance, said: “We appreciate both other patient groups for all their hard work over the years and are happy to be part of this historic momentous occasion working together in an Alliance for better treatment and therapy for all Alpha-1 patients in the UK today.”

Repaired Stem Cells Grow New Working Liver Cells

UK scientists took stem cells made from the skin cells of patients with an inherited liver disease called alpha1-antitrypsin deficiency, used “molecular scissors” to effect a “clean” repair of the gene mutation that causes the disease, and showed, both in test tubes and in mice, that the gene worked correctly when the stem cells made new cells that were almost like liver cells. Nature reports the study, led by researchers from the Wellcome Trust Sanger Institute and the University of Cambridge, in its 12 October online issue.

The study is significant because it uses a tidy method that leaves no remnants of the repair mechanism behind, which could otherwise introduce unacceptable risks in a clinical setting: thus it is a new way of making a “clean correction” to the defect gene.

Patients helped with breathing problems

DESPITE suffering from an incurable lung condition, alpha-1 uk support group member Michael Jones dreams of walking Hadrian’s Wall.

 Now, thanks to a new specialist rehabilitation group, he is   edging closer to achieving his goal next summer.

The 60-year-old, of Stainton, Carlisle, suffers from a genetic condition called Alpha-1 Antitrypsin Deficiency, which can lead to emphysema and other serious complications.

His best bet to ward off further illness is to stay fit – which is why he was referred to the new pulmonary rehabilitation course at Brampton Community Hospital.

Here he has been working with health professionals to tackle his condition and regain his independence.

“If you keep exercising and keep well you can stave off emphysema,” said Michael.

“My ambition is to complete the Hadrian’s Wall walk by the end of next summer.

 John Doyle 17/01/1944 – 24/01/2011
We are saddened to announce the passing of our dear friend John Doyle co-founder member of the Alpha-1 UK Support Group. John was great personal friend to many of us and also a great friend to the group. He worked tirelessly for many years to help make the lives of alphas everywhere a little better, he will be sadly missed by us all. We were all blessed to have known John and to be able to call him friend….a dear friend.
Our thoughts are with Mary and the family….for John now its eternal peace, may God Bless him.

Cochrane study poorly designed, ignores wealth of data, does disservice to rare disease patients, says Alpha-1 Foundation

MIAMI, FL – The Alpha-1 Foundation today challenged a newly published review which questions the value of augmentation therapy for Alpha-1 Antitrypsin Deficiency (Alpha-1).

The article, “Intravenous alpha-1 antitrypsin augmentation therapy for treating patients with alpha-1 antitrypsin deficiency and lung disease” by Peter C. Gøtzsche and Helle Krogh Johansen, was published this week by the Cochrane Library.

“The Cochrane Library has been respected in the scientific community for carefully performed reviews based on solid evidence,” said Foundation President and CEO John Walsh.

“But this report is so flawed in its methodology that it may threaten the reputation of the Cochrane Library. The report does a disservice to rare disease patients everywhere. We hope that therapies for other rare conditions won’t become victims of the same poorly designed analysis.”

Robert Stockley, MD, Director of Research and Development at Queen Elizabeth Hospital, Birmingham, UK, had this critique:

“This conclusion was based on retrospective analysis of published data from only two small pilot placebo-controlled studies that were not powered to evaluate the effectiveness of augmentation therapy. This flies in the face of carefully crafted guidelines from the American Thoracic Society, the European Respiratory Society, the American College of Chest Physicians, and the American Association for Respiratory Care – all prestigious organizations that recommend augmentation therapy for the treatment of patients with lung disease due to Alpha-1. The guidelines are based on the totality of the evidence, scientific understanding of the disease, correcting the biochemical defect, and a wealth of observational studies.”

Danish researcher Asger Dirksen, MD, originally listed as a co-author of the Gøtzsche review, had his name removed before publication.

Dirksen, who was the lead author of both augmentation studies cited by Gøtzsche, said today:

“After seeing the first draft I realized that our points of view were so far apart that collaboration with Peter Gøtzsche and his wife (Helle Krogh Johansen) would not be possible.”

Grifols, Talecris press release on planned acquisition

BARCELONA, Spain and RESEARCH TRIANGLE PARK, NC—Grifols a global healthcare company and leading producer of plasma protein therapies, and Talecris, a US-based biotherapeutics products company, today announced that they have signed a definitive agreement through which Grifols will acquire Talecris for a combination of cash and newly-issued Grifols non-voting shares having an aggregate value today of approximately $3.4 billion (euro 2.8 billion), creating a global leader of life-saving and life enhancing plasma protein therapeutics.

The combination of Grifols and Talecris will create a vertically integrated and diversified international plasma protein therapies company, bringing together complementary geographic footprints and products, as well as increased manufacturing scale. Grifols’ leading global footprint will benefit from Talecris’ strong presence in the United States and Canada. Grifols’ available manufacturing capacity will enable Talecris to increase production in the near term. As a result, the combined company will be better able to meet the needs of more patients with under-diagnosed disease states around the world.

Talecris releases letter to Alpha-1 community outlining research strategy, including recombinant alpha-1 protein Dear Alpha-1 Community:

I am writing to update the community on Talecris’ Alpha-1 research program. The relationship we have with the Alpha-1 community is important to us and we want to keep you informed of several changes as we prioritize our research program. We are in the final stages of planning studies with our intravenous, plasma-derived alpha-1 proteinase inhibitor that will evaluate safety and efficacy in a large patient population. We plan to evaluate a higher dose in these studies, as we know this is an important issue for the community. These studies are a commitment to regulatory authorities, but are also based on our commitment to furthering scientific knowledge in Alpha-1. Talecris is also investing in a new, recombinant technology for producing alpha-1 antitrypsin protein from cells in culture, as opposed to human plasma. While still several years from being considered for human studies, we plan to evaluate the protein produced by these cells for both intravenous and inhaled forms of therapy. Because of the above commitments, which include studies that are required by the regulatory authorities, we have decided not to pursue studies evaluating inhaled, plasma-derived alpha-1 antitrypsin. At this time, Talecris has decided to focus on the research programs described above. We hope you agree that the research path we have chosen is the best one for Talecris and the Alpha-1 community. We continue to increase our investment in the Alpha-1 and respiratory therapeutic areas. With your ongoing support, we will continue to advance the science and therapeutic options for Alpha-1.

Sincerely,

Lawrence Stern Chairman and CEOTalecris Biotherapeutics

10K run in memory of my brother – Kelvin Buck

A WOMAN from Beverley is preparing for a 10K challenge to raise money for a charity close to her heart.

Karen O’Connor, 54, will take part in Jane Tomlinson’s Hull 10K in memory of her brother, Kelvin Buck, 52, of Beverley, who died in October last year.

Kelvin, who had chest problems, was diagnosed with alpha-1 antitrypsin deficiency, an inherited disorder that can cause lung and liver disease, in 1993.

He underwent a double lung transplant at Newcastle’s Freeman Hospital in April last year.

Although the operation was initially successfully, Kelvin then suffered chronic rejection.

Campaign targets Notts lung disease hotspots

This is a campaign that one of our members Joe Lyons has been involved with, keep up the good work Joe: –

HEALTH experts are targeting the areas of Notts worst affected by lung disease as part of a new campaign. Love Your Lungs is being launched today in the county to tackle its high rates of chronic obstructive pulmonary disease (COPD). It is the fifth biggest killer in the UK and includes debilitating lung diseases such as chronic bronchitis and emphysema. New research by Nottingham’s business information and credit data giant, Experian, has revealed the areas where risk of COPD is highest. It shows the majority are in north Notts – though there are also hotspots in Arnold and Gamston.

Oxygen in aeroplanes should be free as air

BY LAURA HANNAM ( Milton Keynes News )

A man who suffers from lung disease is campaigning to stop airlines charging passengers who need to use oxygen when travelling.
John Mugford, 58, from Emerson Valley, has enlisted the help of local MP Dr Phyllis Starkey to petition airline companies to stop preventing
passengers from bringing their own oxygen cylinders on to planes and charging hundreds of pounds extra for them to use the oxygen that the airline provides.