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
Becky Dore completes
Kenilworth Half Marathon 2012
Congratulations and a big THANK YOU to Becky for completing her Half Marathon at Kenilworth and raising funds for Alpha-1 UK Support Group Charity.
25th September 2012
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).
To sign Petition>>>> Click Here
5th October 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:-
7th December 2012
Hi, my name is Kev Terry (drummer for Foe Fighters) and in 2010 I was diagnosed with A1AD (Alpha 1 Antitrypsin Deficiency) and bullous emphysema (lung disease). Although this is a terminal disease, science is improving every day and there is hope that new technologies will become available in the near future that will be able to prolong patient’s lives. My aim is to raise awareness and as much money as possible to help with research.
A brief history
A1AD is a genetic disorder that can be inherited from one or even both parents. There are several different combinations of A1AD which can be more/less damaging than my own, I am an MS. Alpha 1 Antitrypsin is a type of protein that is made in your liver and it protects your lungs, if you have a deficiency it leaves your lungs unprotected and open to diseases. I also smoked for 20 years without knowing that I had this genetic disorder which has sped up the damage to my lungs. I myself have bullous emphysema which means my lungs have cysts which can burst and cause lungs to collapse (this has happened to me twice now). Another umbrella term for all lung disease is COPD, this name is becoming more commonly known but people are still confused by it. A1AD is even lesser known and many general practice doctors still dismiss it because they are not familiar with it.
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Over a period of 10 years I complained of chest pains to various doctors but they all fobbed me off with various explanations, which at the time I believed as I am not a doctor. It wasn’t until just over 2 years ago that I decided something was definitely wrong with one if not both my lungs but on telling my doctor he told me to take anadin and it would sort it out because it was just a pulled muscle!! I had been told this before and this time I had done my own research and I demanded an x-ray to be arranged or I wouldn’t leave his office. I had an x-ray and was told that I had lung disease. My doctor gave me no apology! I had to have an MRI scan but my specialist told me to only expect bad news. After 4 weeks of thinking I only had 6 months to a year left to live the MRI results came back, my lungs were not as diseased as first thought but I now found out that I had 20-30 cysts on and within them (this made my lungs seem more damaged on the x-ray).
Although I seem alright at the moment, I have regular tests and may need an operation to have a third of each lung removed in the future. I do suffer with lung pain most days and I also have to stay away from people with chest infections or heavy colds as this can turn into pneumonia. Every year I have a Flu jab and every five years I have to have a Pneumonia jab but these do not completely protect me so I now try to keep as fit as possible and eat a well balanced diet and avoid things that can affect me such as open fires, cigarette smoke, fireworks, sprays, dust and barbecues. If I can raise awareness to help others see the signs and symptoms then I will feel like I am doing my duty.
19th January 2013