Alpha-1 Alliance Policy Report Launch Parliament

The Alpha-1 Alliance coalition of Alpha-1 UK patient groups and clinical experts who have come together to campaign for better services for Alpha-1 patients will be launching their policy report at a Parliamentary seminar on Alpha-1, which will take place Tuesday, 10th December, 3pm-5pm at Portcullis House in Westminster. The Secretariat of the Alliance have issued the following statement…….

The format of the meeting will be a panel discussion, including Mark Pawsey MP, Ravi and Ray Overton as a patient representative. As you are aware, we have also ask for a representative of the Government to join the panel. The discussion will focus on the outcome of our policy report and the recommendation’s we have developed for better services for Alpha-1 patients.

We also think that is important to have as many patients as possible at the event to demonstrate the unmet medical need of Alpha-1 patients to politicians. We would therefore be grateful if you could invite your members to the event. We are aware that it will be cold and lots of Alphas will not be willing to travel that close to Christmas. However, it is very important to have those patients who are able and interested at the event. I have included the details of the event below and would be grateful if you can ask your members to RSVP to the Alliance’s email address:info@alpha-1-alliance.org.uk. Please also note that patients need to come the Portcullis House 30min before the event to allow enough time to pass security.

Thank you for your help and please just give the Secretariat a call if you have any questions.

Parliamentary Seminar on Alpha-1 antitrypsin deficiency

15:00 – 17:00, Tuesday 10th December 2013

Attlee Suite, Portcullis House

Speakers:

Mark Pawsey MP

Dr Ravi Mahadeva, Consultant Respiratory Physician, Addenbrooke’s Hospital

Ray Overton, Alpha-1 patient 

The Alpha-1 Alliance is a coalition of Alpha-1 patient groups and clinical experts, who have come together to campaign for better services for Alpha-1 patients. It is chaired by Dr Ravi Mahadeva, with support from other expert physicians from different parts of the UK. Patient group members include Alpha-1 Awareness UK, Alpha-1 Support Group and Alpha-1 Advocacy and Action.

At the seminar the Alpha-1 Alliance will launch a policy report, which will include recommendations for better access to services and therapy for Alpha-1 patients.  The format of the launch will be a panel discussion including patients and senior clinicians, which will be chaired by Mark Pawsey MP.

Please come along to support our campaign! Please RSVP to Alpha-1 Alliance’s Secretariat at info@alpha-1-alliance.org.uk / 020 3021 1624.

World Bellyboard Championships

World Bellyboard Championships 8th September 2013 ‘The Ben Stockley Spirit of Bellyboarding’ special award raising funds for Alpha-1.The World Belly Boarding Championship (WBBC) was first started in 2003 at Chapel Porth by Martyn Ward and Chris Ryan as a memorial contest to the late Arthur Traveller, a Londoner who was a regular visitor with his wooden board at Chapel Porth. From humble beginnings with only a handful of competitors it has now grown into the World Championships with over 300 surfers.

My Dad, Ben, and I entered the 2nd contest because it just looked fun and were immediately hooked. We were both regular surfers and Chapel was our home break. In fact, my Dad was one of the keenest surfers I have known and surfed right up until the end of the summer in 2010, when being diagnosed with Alpha-1 which meant surfing the cold atlantic waters just wasn’t an option.
After that first champs I offered to design the t-shirts for the next year and have continued to do so ever since. Every September we’d both man the t-shirt stall, which gave Ben the perfect opportunity to indulge one of his great passions – talking to people. Ben continued to be a regular at the Championships after 2010, helping out behind the t-shirt stall and still bringing his warmth and humour to the event.

This year, on Sunday 8th September for the first time since we entered together in 2004, I attended the World Bellyboard Championships without my Dad. He died just a few days after his 65th birthday back in July. The support from everyone involved in the Championships was amazing and culminated in the giving of a special award ‘The Ben Stockley Spirit of Bellyboarding’. The trophy had been painstakingly crafted by James Otter of Otter Surfboards, who felt moved by Ben’s tale. It was also decided that funds raised from the sale of special Bellyboarding bumper stickers would go to your organisation, the support of which was a great comfort to him.

The sheer number of people who have said to me that Ben had a positive effect on their lives has been outstanding and this was reflected in a ‘paddle out’  in July which saw a group of 40 or so surfers, bodyboarders, body surfers and swimmers make their way beyond the break to scatter Ben’s ashes at the place he so loved. The pictures show: the presentation of the ‘The Ben Stockley Spirit of Bellyboarding’ Nick Holden championship director (in red) announces that Chris Ryan (centre) has won the award and I’m presenting him with the award on the left. A close up of the award during construction – missing base and plaque. Contestants taking part in the event. Ben’s Paddle Out at Chapel Porth. Ben and I with our bellyboards, back in 2004. 

For further information please see www.bellyboarding.co.uk

My brother in-law’s sister is also raising money for you Alpha-1 through taking part in the Wolf Run – she has set up a page for donations: 

www.justgiving.com/Fiona-Rumsby

Please support her.

Leo Stockley

A big thank you to all who took part and raised funds for Alpha-1 it is very much appreciated.


Alpha-1 Petition delivered to Downing Street

On Tuesday 30th July a group of Alpha-1 patients and clinicians representing the Alpha-1 Alliance delivered the campaign’s e-petition to Number 10 Downing Street. The e-petition, which closed with 2,389 signatures, calls on the Government to nationally commission a highly specialised service for Alpha-1 within the NHS so that patients can access specialised support and treatment, including augmentation therapy.



Dr Ravi Mahadeva, Alpha-1 specialist and Chair of the Alpha-1 Alliance said “I’m delighted at the level of support our e-petition received. By taking this petition to Downing Street and presenting it for the Prime Minister to see, we’re making sure that politicians at the very highest level are aware of our campaign and the need to commission new NHS services for Alpha-1. 

Over the next few months we’ll be substantially increasing our campaign activity, which will include organising a Patient Day in Parliament and launching a policy report on the views and experiences of patients.”

Mark Pawsey, MP for Rugby said “I’m so pleased to see my constituent, Steven Leadbetter, delivering this important petition to Downing Street. I’ve met with Steven on several occasions and have made a commitment to champion the Alpha-1 Alliance campaign in Parliament. I think it’s crucial that we raise the profile of Alpha-1 amongst parliamentarians to help them understand how patients are affected and the benefits of access to new services.

Jenni Nankervis The Melbourne Age Run

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 here we are “Alpha-1 Team” all ready to start our walk. This year we knew the set up, so we all walk through the start banner together arms up & waving. We also waited for each other and walked through the finish line together as well. They announced our cause over the mic. Before the walk a lady came up to me pointed at my t-shirt and said ‘my day’s got that and says I should be tested’ So at least we all raised some awareness today. I am sending some info to that lady and her father and she is going to be tested. WOO HOO THANK YOU TO MY AMAZING TEAM FOR HELPING ME RAISE AWARENESS ON A VERY COLD MORNING. THANK YOU ALSO TO THE WONDERFUL FRIENDS WHO KINDLY DONATED TO THIS VERY WORTHWHILE CAUSE.

LOVE YOU ALL.”

Well done to Jenni and all those who took part.

Please visit Alpha-1 Association of Australia:-

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.

 

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)

 

Alpha-1 Foundation applauds results of RAPID Trial

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 Race 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 30th 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 1st, 2nd,  3rd, 4th and 5th 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.”

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/

17th May, 2013

The Alpha-1 Project Announces $150,000 Commission

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.

Alpha-1 Alliance – Future of augmentation therapy in the UK

Press release from Alpha-1 Alliance – Future of augmentation therapy in the UK

The Alpha-1 Alliance is campaigning for the establishment of a highly specialised service for Alpha-1 patients within the NHS in England. A crucial element of a new service will be access to augmentation therapy for patients who meet set clinical eligibility criteria.


In exceptional circumstances, patients can be treated with unlicensed medicines. However, in order to secure access to augmentation therapy routinely as part of a highly specialised service, a licensed therapy will need to be made available.

Grifols, the Spanish manufacturer of augmentation therapy Prolastin, has recently communicated to the Alpha-1 Alliance that they do not currently intend to seek a license for Prolastin in the UK. Our understanding is that due to regulatory complications Grifols will not be taking forward a license application at the present time. While this is extremely disappointing news, the Alpha-1 Alliance is grateful to Grifols for the support they have shown towards the campaign and the Alpha-1 community in the UK.

The Alpha-1 Alliance has started the process of formally engaging with manufactures of similar augmentation therapy products in order to ensure that a treatment is made available in the UK. All members of the Alpha-1 Alliance (including the Secretariat) remain wholly committed to taking forward the campaign for a highly specialised service with access to augmentation therapy, and we are confident that this can be achieved.