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.
Presentation films from 2017 Patient and Family AL Amyloidosis Infoday
The presentations from the most recent Patient and Family AL Amyloidosis Infoday, which took place in November, are
now available to view. Click the link below to watch the videos.
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
Prof Philip Hawkins, Professor of Medicine and Clinical Director, National Amyloidosis Centre, London
Crescent Conference Centre, c/o International Students House Building, 229 Great Portland Street, London W1W 5PN 9.30am
Secure your place
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.
Amyloid Support Group UK Patron, Michael York, addresses National Press
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
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)
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.
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.
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.”
Patient & Family Infoday on 5 September 2014
UK is hosting its annual Patient and Family AL amyloidosis Infoday on Friday 5 September 2013
at the Park Crescent
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.
Annual Patient & Family Infoday on 13 September 2013
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.
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
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
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 firstname.lastname@example.org.
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)
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.
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
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.
Report onMyeloma UK Patient and Family AL amyloidosis Infoday (29 May)
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.
Myeloma UK Patient and Family AL amyloidosis Infoday
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
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.