Media Publications & Articles of Interest

• December 2011:  2nd edition of Rare Diseases News now available here
  
  
• An MRCP/IPPOSI Seminar was held in 2011 regarding Patient Registries.  The report has been published.  You can read it here
  

• The first edition of the Rare Diseases News  24th Oct 2011.

• A paper has recently been published in the Journal of Pediatrics regarding cysteamine toxicity in patients with cystinosis.  
  
  We urge everyone to read this and be aware of some of the possible very serious side effects of Cystagon.
  http://www.cystinosis.org/filemanager/file/Cystinosis%20Article%20Library/Cysteamine%20Cystagon/Besouw%20et%20al.%202011.pdf
  
  
  

• H.R.B. Press Release prior to our Research Symposium on 13th Oct. 2011
  

• More details on our Research Symposium on on "Research" Page.
  
  
• UK based children's charity Sparks has awarded a grant to the team in RGU, Aberdeen to develop a gel for the treatment of eye-related complications in patients with cystinosis.
   
  Why not read about it and meet Lena Forsyth and her family.
  
  http://www.rgu.ac.uk/news/researchers-to-to-develop-new-treatment-for-rare-childhood-disease
  
  
• Some recently published research papers of interest (updated May 2011):
  Sedoheptulose screening.pdf 
  Cellular therapies.pdf  
  Cysteamine restores glutathione redox status.pdf 
  Kidney preservation by bone marrow cell transplantation.pdf
  
  
• An exciting new Cystinosis research project, using the very latest techniques, has been granted funding by C.R.N.   The group who will undertake this new work are based at Sunderland University and led by Professor Roz Anderson.  Prof. Anderson has been working on a separate cystinosis project for the past number of years and which is funded by the Cystinosis Foundation U.K. 
  May 2011
  Read More
  
  BBC North East News
  
  
• Raptor Pharmaceutical to Enrol five additional Patients in pivotal Phase 3 Clinical Trial of DR Cysteamine for the Potential Treatment of Nephropathic Cystinosis.         15th February 2011
  
  Read more 
  
  
• Ziad Omran worked on Cystinosis research with Professor Don Cairns in R.G.U.  This work has just been published in Bioorganic & Medicinal Chemistry Letters.   January 2011
  
  PEGylated Derivatives paper
  
  
• Cystinosis Foundation Ireland is part of the Medical Research Charities Group who recently lobbied the Government not to cut the €1million currently available through the Health Research Board for medical research.
  
  This was reported in the Irish Times, 26th October 2010
  
  http://www.irishtimes.com/
  newspaper/health/
  2010/1026/1224282002820.html
  
  
• Below is a link to an abstract of Minnie Sarwal and Poonam Sansanwal's work: "Insights into novel cellular injury mechanisms by gene expression profiling in nephropathic cystinosis" which was recently published in Pub.Med: Dec. 2010
  
  http://www.ncbi.nlm.nih.gov/
  pubmed/20865335
  
  
• Dr. Patrick Harrison spoke at one of our Golf Day Dinners and using the golf analogy described the work he is undertaking on our behalf.  It makes an interesting read:      
  P Harrison Golf.pdf
  
  
  
• Another support group, "Natalie's Wish" (Cystinosis Research Foundation) recently launched their latest video, please take a look: 
  

  http://www.youtube.com/watch?v=yPSFTlUvEGc

  
  
• Gene Therapy Researchers form Consortium to bring Cystinosis findings to clinical trials; disease reversed in laboratory tests.  Read More
  
  
• Robert Gordon University, home to our Pro-drug project has recently jumped 27 places in the National Research Quality League Table
  Read more

• This article appeared in the Irish Times on 17th March 2009.   Treating her son like a normal eight-year-old boy despite his rare genetic disease is part of her job as a parent, says Anne Marie O’Dowd. "We're in this for life"is her story as told to FIONA TYRRELL, of the Irish Times 

•  http://www.irishtimes.com/newspaper/health/2009/0317/1224242941746.html
  
  

• An article discussing our project at University College Cork appeared on 26th June 2008 in The Irish Times
  
  
• Sinéad & Ciara Maguire - "2 in a Million", Daily Star (PDF)
   
• Two US scientists and their UK collaborator were awarded the Nobel Prize for medicine in 2007 for their groundbreaking work in gene technology.  Their work plays a big part in our research project in Stanford University - Nobel Prize Article (PDF)
  
• Kenny Murdock is our "Cystinosis Duck" - Can you spot him in this article (PDF)
   
• Luke Hennelly "Calling for our Help" - Daily Star 14th June 2003  (PDF)
   
• "Help us save Luke's life" - Sunday World 17th August 2003 (PDF)
   
• Darren Barnes is featured in "No treatment for a rare disease" - The Star 8th November 2003 (PDF)
  

Look back at our activities through these Newsletters from recent years:

• Review of the Year 2009
• Review of the Year 2008
• Review of the Year 2007
• Review of the Year 2006 

Stephen Rea and Cystinosis Foundation launch Women's Mini Marathon 2008 campaign - Read More