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RP Fighting Blindness (RPFB)

RP Fighting Blindness (RPFB)

ABOUT RETINITIS PIGMENTOSA (RP) AND RP FIGHTING BLINDNESS (RPFB):


Retinitis pigmentosa (RP) is a hereditary disease of the retina that results in progressive loss of sight and blindness.  In the UK, it is estimated that some 25,000 families are affected by RP and there is currently no available cure or treatment.


Our Vision - is of a world in which anyone affected by retinitis pigmentosa does not need to fear the loss of their sight, because they are well supported and have access to treatment or a cure.


Our Mission - is to stimulate and support high quality medical research with the aim of increasing scientific understanding of retinitis pigmentosa, (and related conditions) and find treatments or cures for the condition that, when developed, are accessible to anyone affected, and to identify or provide good quality and universally-accessible information and support services for people affected.

 

OUR OBJECTIVES:
 

  1. The fundamental reason for our existence is our medical research programme and our desire to find a treatment for RP
  2. Providing Information & Support services is an essential part of the RPFB’s remit.  The charity believes it is essential that people affected by RP benefit from a cycle of mutual support
  3. Reaching out to and engaging with RP patients in the UK is our third priority and thread of work, with emphasis on reaching newly diagnosed patients, young people and disproportionately affected ethnic groups
  4. Also there is an emerging role for the charity as the patient voice and a growing expectation that the charity will embrace this objective in the future.

 

OUR HISTORY:


RP Fighting Blindness is a national charity, founded in 1975 by Lynda Cantor MBE, following her own diagnosis of RP. She was concerned with the lack of knowledge about the disease in the medical profession, as well as the limited support for patients.   Though the charity now employs five full time and seven part time staff, we are still grounded in our volunteer roots.  We have more than a hundred volunteers supporting us on a regular basis.


OUR RESEARCH:


RP Fighting Blindness is entirely funded by voluntary donations. No public money is received.  The charity is looking to significantly raise the level of income for our Research Fund. This fund supports national research projects that are formally reviewed by our Medical Advisory Board, then approved by our Trustees. We currently fund seven research projects around the UK and are currently committed to grants at the University of Essex, UCL Institute of Ophthalmology and the University of Manchester.


Currently demand for funding is so high that a call in 2013 inviting applications for a special three year research grant, the ‘RP Innovation Award’, aimed at generating three or four competitive applications for funding in fact resulted in six applications being submitted.  Therefore for the grant of £150,000 available over 3 years the charity in fact received potential projects that amount to £900,000 worth of funding.


Since inception, we have invested over £12 million into medical research. We have been involved in some very significant breakthroughs and are proud to have developed good relations with the leading research institutions. The various treatment strategies being investigated include Gene Therapy, Stem Cell Therapy, Transplantation and Artificial Vision. 


CASE STUDY:


The Gene Team – Taking Gene Therapy from the lab to clinical trial


One of the exciting projects we are currently in the process of raising funds for is for Professor Robin Ali, Professor of Human Molecular Genetics and Head of the Department of Genetics at the UCL Institute of Ophthalmology and his team in order to take their successful lab tests through to clinical trials on real people.  The research focuses on developing safe and effective vectors (gene delivery systems), based on viruses, to deliver genes to the light-sensitive photoreceptor cells and pigment cells of the retina.  Excitingly results indicate that this therapy is safe, and can restore vision in some cases and to date the team’s work has shown that 10 different forms of severe sight loss could be rescued using viral vectors. 


A dedicated specialist team is needed until 2016 to make the promising lab tests ready for clinical trial.  This work will include:

1) The manufacture of clinical grade vector

2) The identification of patients for clinical trial and the establishment of a 'baseline'

3) The development of clinical trial protocol and toxicity studies

4) Regulatory submissions and approval from medical committees 


RP Fighting Blindness has committed to investing a total of £750,000 over 5 years into RP gene therapy research at UCL Institute of Ophthalmology.  More information can be found at: www.thegeneteam.org.uk.


THE FUTURE AND WHY ONGOING FUNDING IS SO VITAL:


As the above case study shows, now that potential treatments for RP are currently undergoing clinical trials, this is a very expensive time for the research.  It also demonstrates that huge advances can be made with the help of core ongoing funding, which allows RPFB to ensure that the infrastructure of research teams; their knowledge, science, databases and networks remain in place and are not threatened by lack of continuity at a crucial point in their work.


As an organization we believe that a cure will be found, although the timescale will be determined by the quality and quantity of research undertaken. In turn this is related, of course, to the amount of money invested. For this reason relatively small amounts of funding go a long way towards RPFB’s goal that in thenear future many patients will not lose their sight.

Registered charity no.1153851

 


 

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The information provided in all of our blogs reflects only a narrative of some elements to consider on the topic. The blogs do not contain considered legal or accounting advice and should not be relied upon as advice. Please see our website's terms and conditions for full details of our disclaimer. If you are interested in obtaining advice, please contact us and one of our accountants will be happy and able to advise you on your own particular circumstances.


 

RP Fighting Blindness Fundraiser
Meet the Team | Jayne

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