Amyloidosis Support Group UK

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News

This page features the latest news from Amyloid UK Support Group...and any news that we might think may be of interest.
We are always looking for news. If you have an idea or would be interested in writing an article, please let us know.  Also, if you see a story online mentioning Amyloid please send us the link and we can post it on the site.

Patient and Family AL amyloidosis Info Day - Friday 18 November 2016


Patient and Family AL amyloidosis Infodays bring people affected by AL amyloidosis together to share experiences, hear from experts and to learn more about the support Myeloma UK provides.

• Learn about current treatments and latest research
• Hear from patients and carers about their experiences
• Participate in interactive breakout sessions
• Meet others in a similar situation


Chair: Prof Philip Hawkins, Professor of Medicine and Clinical Director, National Amyloidosis Centre, London

Park Crescent Conference Centre, c/o International Students House Building, 229 Great Portland Street, London W1W 5PN
9.30am – 4.30pm


Secure your place now!

Download a registration form (DOWNLOAD LINK BELOW) or contact Zara Gilmour, Services Admin Support, Myeloma UK on +44 (0)131 557 3332 to book your place.  Due to the popularity of Infodays, Myeloma UK recommend booking early to guarantee your place.

Download Registration Form/Flyer

Amyloid Support Group UK Patron, Michael York, addresses National Press Club

Our Support Group Patron, the Award-winning actor Michael York, discussed the challenges he faces with the rare disease of Amyloidosis and how he became a spokesperson for this little known ailment at an August 12, 2016 luncheon at the National Press Club. Michael York’s stepson is Star Wars producer Rick McCallum. You can watch the video here:

 

July 2015 Two-Step Tx Shows Promise in Systemic Amyloidosis

Read a new article from Medpagetoday.com about significant declines in liver stiffness with an anti-amyloid monoclonal antibody: 

Click here to visit MedPage Today

July 2015

Improving Treatment for Systemic Amyloidosis

Here's a new article on improving treatment for systemic amyloidosis from the Medicalxpress website: 

Click here to visit medicalxpress.com

July 2015

Annual Patient & Family Infoday - 20 November

Myeloma UK is hosting its annual AL amyloidosis Infoday in London on 20 November at the Park Crescent Conference Centre.

Running from 9.30am to 4.30pm, the event has a full programme of activities and speakers including Prof Philip Hawkins, Professor of Medicine and Clinical Director, National Amyloidosis Centre, University College London Medical School and Royal Free Hospital.

Visit the Myeloma UK website for updates on the programme and more information about how to find the venue. 

You can also download the pdf flyer about the event below (You will need acrobat reader on your PC to see the flyer. If you don't have it , go to this website: http://www.adobe.com/products/reader)

Click here for Myeloma UK website

Click here to download Infoday flyer

April 2014

MICHAEL YORK BECOMES SUPPORT GROUP WEBSITE PATRON


The Amyloidosis Support Group UK Website is extremely proud to announce that Michael York, the renowned actor of stage and screen has kindly agreed to be its Patron.


Michael became unwell and showing the signs of the disease in 2009, but was not correctly diagnosed until 2012 and as most of us know, late diagnosis is far from unusual and can have serious consequences.  Here is a link to an interview Michael gave to the Guardian which details more about his story.

http://www.theguardian.com/lifeandstyle/2013/oct/20/michael-york-battle-with-amyloidosis

Jenny Collis, founder of Amyloidosis Support Group UK Website, said: “Michael admires what we are doing and is more than happy to be a patron of our website.  He feels that the website is an excellent resource and offers us congratulations for creating something that has the power to save lives and reduce suffering.


“We hope with Michael becoming our Patron that we can use his name to heighten the awareness of the website which is aimed at having a slightly less clinical ‘tone’ and of course awareness of Amyloidosis in all its forms.”

Annual Patient & Family Infoday on 5 September 2014

Myeloma UK is hosting its annual Patient and Family AL amyloidosis Infoday on Friday 5 September 2013 at the Park Crescent Conference Centre, 229 Great Portland Street, London, W1W 5PN from 9.30am – 4.30pm.

Chaired by Prof Philip Hawkins from the National Amyloidosis Centre (NAC), at the Royal Free Hospital, and including a wide range of informative presentations and discussions, the day also offers the opportunity to meet with people living with amyloidosis, share experiences and find out more about future developments in treatment.

For more information or to register contact Nicola Ewart at Myeloma UK on 0131 557 3332 or email nicola.ewart@myeloma.org.uk.

You can also download the pdf flyer about the event below (You will need acrobat reader on your PC to see the flyer. If you don't have it , go to this website: http://www.adobe.com/products/reader)

Click here to download the event flyer

August 2013

Annual Patient & Family Infoday on 13 September 2013

Myeloma UK is hosting its annual Patient and Family AL amyloidosis Infoday on Friday 13 September 2013 at the Institute of Physics in London from 9.30am – 4.30pm.

Chaired by Prof Philip Hawkins from the National Amyloidosis Centre (NAC), at the Royal Free Hospital, and including a wide range of informative presentations and discussions, the day also offers the opportunity to meet with people living with amyloidosis, share experiences and find out more about future developments in treatment.

For more information or to register contact Nicola Ewart at Myeloma UK on 0131 557 3332 or email nicola.ewart@myeloma.org.uk.

You can also download the pdf flyer about the event below (You will need acrobat reader on your PC to see the flyer. If you don't have it , go to this website: http://www.adobe.com/products/reader)

click here to download flyer

Further information about Myeloma UK can be found here

August 2012

A comprehensive review article about AL Amyloidosis by the combined Amy Doctors in France has been published by Orphanet Journal of Rare Diseases.

Click here to read the article

August 2012

Myeloma UK to host annual Info Day in London in September

Myeloma UK is hosting its annual Patient and Family AL amyloidosis Infoday on 7th September 2012 at the Institute of Physics in London.

Chaired by Prof Philip Hawkins from the National Amyloidosis Centre (NAC), at the Royal Free Hospital, and including a wide range of informative presentations and discussions, the day also offers the opportunity to meet with people living with amyloidosis, share experiences and find out more about future developments in treatment.

For more information or to register contact Nicola at Myeloma UK on 0131 557 3332 or email nicola.ewart@myeloma.org.uk.

You can also download the pdf flyer about the event below (You will need acrobat reader on your pc to see the flyer. If you don't have it , go to this website: http://www.adobe.com/products/reader)

click here to download file

May 2011

AMYLOID SPECIALIST'S WEBCAST FROM INTERNATIONAL MYELOMA WORKSHOPS IN PARIS

Between 3rd and 6th May, Paris played host to almost 2000 myeloma specialists from all over the world. It was the 13th International Myeloma Workshop, held every two years to highlight emerging advances in our understanding of the biology and treatment of myeloma.  Click this link to watch a webcast with Dr Merlini who summaries and highlights the significant points from the Amyloid discussion at the event: http://tinyurl.com/63qceo5. Other videos from the workshops can be viewed here:
http://tinyurl.com/67ns7e5

May 2011

Patient & Family AL amyloidosis Infoday - 9th September 2010

Myeloma UK is hosting its annual Patient and Family AL amyloidosis Infoday on 9th September 2011 at the Institute of Physics in London.

Featuring talks by experts in the field, the day also offers the opportunity to meet with people living with amyloidosis, share experiences and find out more about future developments in treatment.

For more information or to register contact Rebecca at Myeloma UK on 0131 557 3332 or email rebecca@myeloma.org.uk.  

You can also download the pdf flyer about the event here (You will need acrobat reader on your pc to see the flyer.  If you don't have it , go to this website: http://www.adobe.com/products/reader  

click here to download file

January 2011

Nature article: Antibodies to human serum amyloid P component eliminate visceral amyloid deposits

To read this in-depth and informative article - click the following link (requires adobe acrobat reader):

click here to download file

August 2009
Amyloidosis presentation from the Mayo Hematology/Oncology Conference
 
Attached is a copy of the presentation made by Dr. Shaji Kumar at the beginning of August at the Mayo Hematology/Oncology conference on Amelia Island.

Below is a link to download the presentation:

click here to download file

August 2009
Amyloidosis Webinar
 
This is from a month or so ago, but is new to this site.  It is a 45-minute webinar given by Belinda Ng, MD, a cardiologist who trained at Boston Amyloid Centre.  It discussed types of amyloidosis, diagnosis and treatments.
 

August 2009
New research article published by Italian specialists
 
Drs Palladini and Merlini from Pavia, Italy, have had an excellent article
published in Haematologica. Titled, "Current treatment of AL amyloidosis", it appears in  Vol 94, Issue 8, 1044-48 of the journal.
 
The specialists are from the Amyloidosis Research and Treatment Center, Biotechnology Research Laboratories, Fondazione IRCCS Policlinico San Matteo, Department of Biochemistry, University of Pavia, Italy
 
The whole article can be downloaded for free at: http://www.haematologica.org/cgi/content/full/94/8/1044

Extract:
Immunoglobulin light chain systemic amyloidosis (AL) is a progressive
disease caused by monoclonal light chains with specific mutations that
confer a unique propensity to misfold from their native structure to less stable, partially folded intermediates that self-aggregate into oligomers and then into the highly-ordered cross β-sheet structure which defines amyloid fibrils.
 
At least 11 additional proteins, synthesized by different organs (liver, intestine, etc) can cause systemic amyloidoses which can be difficult to distinguish from AL amyloidosis on a clinical basis. These proteins form amyloid deposits that share the common tinctorial, green birefringence under polarized light after staining with Congo red, and ultrastructural features, rigid, non-branching fibril with a distinct diameter of 7.5 to 10 nm.
 
The unequivocal identification of the protein forming the amyloid fibril is essential for the choice of therapy. A mistake in protein typing may have catastrophic therapeutic consequences, such as performing an autologous stem cell transplant in a patient with transthyretin amyloidosis who should receive a liver transplant.
 
Proteomics technology has significantly improved the typing of amyloid deposits and is routinely applied on abdominal fat aspirates at our Center.

 
May 2009
Report on Myeloma UK Patient and Family AL amyloidosis Infoday (29 May)
 

Website contributer Ken Mantel offers an insight into Myeloma UK Infoday.

 

"At last, thanks to the support of the Myeloma foundation in Edinburgh and the National Amyloidosis Centre at the Royal Free Hospital London the first ‘Infoday’ particularly aimed at patients, carers and their friends and families suffering from AL Amyloidosis was held in London as an all day seminar.

 

My wife and I flew back from our holiday so we could attend, and in common with other attendees I believe the reaction to holding the infoday was the belief that maybe the tunnel was not so dark and perhaps their really is a light at the end of it.

 

Below is a link to my article, which is summary of talks and events is a personal diary and may not be the opinion of all attendees.

 

It is based on my best understanding of proceedings and I hope those of you reading this also refer to the Myeloma Foundation website and some of their excellent hot off the press pamphlets specifically dealing with our disorder.

 

As I said in my own personal story ‘unwanted and unloved’, but now at least amyloidosis sufferers in the UK have the possibility of some support.


Please click on the link to open the article.

 

click here to download the full article

May 2009
Myeloma UK Patient and Family AL amyloidosis Infoday (29 May)
Myeloma UK is holding a patient and family info day on Friday 29 May in London. At the event vistors can meet others with AL amyloidosis, meet the experts,share your experiences and get a copy of the new AL amyloidosis information book.
For more information click on this link: http://www.myeloma.org.uk/Page.aspx?pid=1358 

 
May 2009
Drug Anti-body Breakthrough By UCL Centre
Professor Mark Pepys (Director of the UCL Centre for Amyloidosis and Acute Phase Proteins) describes how his long-standing commitment to amyloidosis research has led to medical breakthroughs and a collaboration with pharmaceutical group GlaxoSmithKline to develop a drug-antibody for the disease.  
 
Click on this link to listen to his interview: http://www.ucl.ac.uk/news/news-articles/0904/09042401

www.amyloidsupportgroup.co.uk - you are not alone anymore

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