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News

This page will feature 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 on line mentioning Amyloid please send us the link and we can post it on the site.

 July 2010

Patient & Family AL amyloidosis Infoday - 10th September 2010

Myeloma UK is hosting the Patient and Family AL amyloidosis Infoday on 10th September 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

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

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