The realities of Spinal Cord Injury are far more complex than just not walking. When someone becomes paralysed, they are unable to coordinate the complex signals needed up and down the spinal cord to undertake urination. The bladder becomes paralysed and individuals with SCI are often unable to tell when they need to urinate and almost all paralysed people are unable to go to the bathroom without the use of catheters, other pieces of equipment and extensive use of pharmaceuticals to assist with bladder spasms.

Any form of catheterisation causes significant health problems for paralysed individuals as it enables the introduction of microscopic bacteria directly into the bladder, resulting in complex urinary tract infections (UTIs). In paralysed individuals, UTIs cause a significant increase in painful spasms and spasticity all over the body but also in the bladder itself, causing leakage of urine. UTIs are often accompanied by fever, chills and debilitating fatigue, all of which severely impact the paralysed individual’s ability to lead an independent and fulfilling life. Untreated, UTIs can lead to further medical complications, hospitalisation and even death caused by sepsis.

Paralysed people have no other available alternative methods to urinate and therefore must use catheters despite their inherent risks. The best care in the world will not prevent bacterial colonisation of the paralysed bladder; care can only mask the symptoms. To deal with the problem, we need cure.

Thankfully, those in the field of regenerative medicine are moving towards a solution. This week saw the publication of an article by Dr Jerry Silver and team in the Journal of Neuroscience entitled ‘”Nerve Regeneration Restores Supraspinal Control of Bladder Function after Complete Spinal Cord Injury”. Although still in early, animal stages this is great news for those relying on catheters.

Hope is here, and change is on the horizon!

Cure Girls

25 years ago, Rick Hansen completed his ‘Man in Motion’ World Tour – a trans-global wheelchair push-fest to raise money for research and those living with spinal cord injury. To celebrate this anniversary (and Rick’s continued standing as a Canadian hero), the Rick Hansen Foundation (RHF) has recently celebrated the 25^th anniversary. A scathing article “Behind the Rick Hansen Foundation” in Canada’s The Star Phoenix newspaperoffers us an interesting insight into where this organisation gets its money from and how it spends it. Prepared to be shocked!

Seasoned cure campaigners, will be familiar with the Rick Hansen Foundation (RHF). In 2011/12, cure activists launched a campaign which aimed to find out what percentage of funding RHF was spending on a cure for chronic spinal cord injury (SCI). Despite hundreds of supporters’ requests for transparency through several email campaigns, RHF refused to be open about what they were spending their millions on. Talks eventually broke down and activists were dismissed with well-meaning but essentially empty rhetoric about the need for collaboration and the importance of care.

David Baines June 22^nd article in The Star Phoenix supports what advocates have long suspected – there is no coherent strategy is place to ensure chronic SCI becomes curable. What’s worse is that this organisation is eating the lion’s share of funding and there is no accountability to those it purportedly serves.

The table below summarises the total cost of the anniversary expenditure, estimated to be in the region of $17m – $19m (Canadian dollars). Some could argue that to make money you have to spend money, but as we shall see later, expenditure for the celebrations far out-weighed any revenues generated by the anniversary celebrations.

Let’s look specifically at what the money for the celebrations was spent on. The largest expenditure, costing nearly $11m was the cross-Canada relay which retraced Hansen’s original route. No expense was spared for this and instead of using a torch, participants received specially made ‘Rick Hansen Medals’. The celebrity-studded ‘Homecoming Gala’ weighed in $1.95m and generated only $274,572, resulting in a net loss of $1.67m. RHF staged an international conference in Vancouver as part of these anniversary celebrations, the aim of which was to share ‘best practices for spinal cord research and care’. Costing $1.44m and generating only $200,600 it resulted in another net loss of $1.24m.

Other anniversary celebrations included an “International Outreach Programme” which saw Hansen and his team go on a global tour, the aim of which was to further collaboration on spinal cord research and care. The cost for this came in a $1.27m and as there were no measurable outcomes it’s difficult to evaluate if this programme was value for money.

The anniversary celebrations also saw the launch of “Planat” – an online ratings tool that enables users to rate the accessibility of buildings and public spaces. It’s apparently being well received but software specialists have queried the cost; a hefty $1.11m.

RHF has failed to recoup any of its anniversary expenditure through revenues as the Foundation made a large miscalculation regarding how much they thought the celebrations would generate. The goal was to raise $250m in donations and future commitments but as the table below shows only $84m has been secured, a majority of which is tax-payer money.

So, were the celebrations worth it? It would appear that a majority of the generated income would have been donated regardless of the anniversary celebrations, rendering anniversary expenditure increasingly difficult to justify. RHF has countered this argument by suggesting that one of the primary goals of the anniversary celebrations was to ‘raise awareness’. Again, with no measurable targets or outcomes, it’s anyone’s guess if this goal has been met.

RHF expected revenues to be greatly boosted by the anniversary celebrations but, as the table below shows, there were no significant increases in total revenue.

And it’s not just the anniversary celebrations that are raising questions about financial leadership at RHF. The article raises questions about a lack of commitment to financial transparency, unethical financial practices regarding taxes and unjustified and secretive compensation packages.

The Foundation argues that the investment of $17m – $19m in the anniversary celebrations was calculated, insisting that it was a strategic investment to capitalise on a one-time opportunity. However, the figures speak for themselves; it was a gamble to invest so much in the anniversary celebrations and it clearly hasn’t paid off. The anniversary celebrations can only be seen for what they really are: a huge waste of desperately needed funds.

Stay tuned to Cure Girls, StemCells&AtomBombs and CareCure to find out how you can help address the mismanagement of desperately needed funding.

Cure Girl Ruth