As CEO of the IMNDRF I was delight to attend The Irish Stem Cell Foundations first public address on Jan 30TH 2010 held in the Davenport Hotel, Dublin. The audience comprised of interested parties from several different disciplines but to my mind the most important group of representatives was the patients who were in attendance.
Patients who have a keen interest in advancing stem cell research in search of a cure were given a voice and that voice was clear – motivation for moving stem cell research forwards will more than likely be driven and sustained by patients but they caution that guidance from experts in the field must be sought and adhered too.
Speakers for the day were scientist, Dr. Steven Sullivan, clinician Prof. Orla Hardiman and a patient representative Martin Codyre. All three highlighted the urgent need to educate the general public on all areas of stem cell research in order to reduce risk to the Irish patient.
The medical profession has a pivotal responsibility to : ‘First, do no harm’ but unfortunately there are more and more bogus stem cell clinics appearing which are exploiting vulnerable patients with their claims of the ability to ‘cure’ selected diseases. Professor Orla Hardiman highlighted that the medical profession is learning first hand about patient groups who are traveling aboard, spending several thousands of Euros on treatments which will not yield the results that the patients are paying and hoping for.
As a patient who has a keen interest in advancing stem cell research, Martin also highlighted these practices and he stressed the need for individuals to educate themselves about stem cells before making any rash decisions. Indeed the ISCF has developed a handbook which highlights questions to ponder before agreeing to stem cell treatments. The information is free for download on the ISCF site.
http://www.irishstemcellfoundation.org/sections/infopatients/infopatients.htm
Comments and questions from the floor stimulated some very lively discussion from a political, societal and economic perspective with the overwhelming need to educate thereby dispelling some of the myths surrounding stem cells been resonated. The fact remains, stem cell treatments are a very exciting medical advancement and have been around for several years as a treatment modality for various conditions but that does not mean that stem cells are an available treatment for all conditions.
As an advocate for the MND population I came away with the reassurance that the Irish MND research group is at the cutting edge of stem cell research but we have a journey ahead of us. The Irish population needs to pool all resources to push through appropriate legislation that will enable many of the experts in the field of stem cell research to conduct studies in a safe and ethical manner. Governmental investment into stem cell research will position Irish medical research in a competitive light internationally and will hopefully yield great therapeutic promise in this generation and generations to come.