Archivio mensile:giugno 2013

$20m Wasted on Anniversary Celebrations: Why it’s time for leadership change at the Rick Hansen Foundation

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Rick Hansen - Man in Motion25 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 25th 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 22nd 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.

Activity  Cost
Cross-Canada Relay $10.94m
Homecoming Gala $1.95m
International Conference $1.44
“International Outreach” Programme £1.27m
“Planat” – online accessibilities rating tool $1.1m
Total Anniversary Expenditure $17m -$19m

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.

Source  Amount
Government grants, corporate contributions & sponsorships that were received and spent during the anniversary campaign $23.3m
Provincial Gov’t funding for the BC Neuro-trauma Fund (Not new funding, to be spread over 5 years) $10m
Provincial Gov’t funding for Rick Hansen Institute (Not new funding, to be spread over 7 years) $11
Federal Ministry of Western Economic Diversification (WED) (last tranche of a $13.5m, three-year funding agreement) $4.5
Federal Ministry Western Economic Diversification (WED) (to be spread over five years) $35m
 “Alberta government repurposing” $500,000
Total revenue generated during anniversary celebrations $83.3m

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.

Year Ending Total Revenues
31st March 2010 (the year prior to the tour launch) $24.9m
31st March 2011 (during tour) $22.4m
31st March 2012 (during tour) $27.2m

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.CANADIAN PUBLIC RELATIONS SOCIETY - The Canadian Public Relation

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

The Contradictions of Spinal Cord Injury

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walking on sunshine

Every day I read interviews of people who have spinal cord injury,  and every time I hear repeating no sense sentences.

I respect their different opinions but I cannot understand HOW paraplegics and tetraplegics think.

It is clear that spinal cord injury completely changes the lives both of the injured and the people who live with them.

It is true that we have survived and we must try to live our lives (especially in respect of who cannot), but it is also true that to live a really enjoyable life in our case is utopia.

When I say this people who don’t know me think I’m depressed, lonely or I haven’t accepted my condition. They tell me it isn’t true and despite the wheelchair I can do anything I want.

Cure Girls - On A Mission To Reverse Paralysis - Chronic Spinal Cord Injury Must Become Curable

Cure Girls – On A Mission To Reverse Paralysis – Chronic Spinal Cord Injury Must Become Curable

If  it were true, I would be walking on the beach with my friends, the Cure Girls or even a nice young man.

I would really love that.

I realise that the vast majority of us [including me] often feel helpless when facing with the consequences of spinal cord injury and then activate a sort of self defence mechanism.

Often we don’t speak about the ‘real’ consequences of spinal cord injury and we do even less in public.

The inability to manage our bodies independently often makes us uncomfortable and embarrassed. we try to hide what we can. i think we do it for different reasons and more or less unconsciously. Perhaps we want not be “pitied”; we hope that the glances of sorrow and set phrases that we are asked diminish.

But after twelve years of being FORCED with living in a wheelchair, I realized this is useless as who see us and “love us” is very sorry for what has happened. This is a spontaneous HUMAN REACTION that we can identify with.

The ability to understand that being paralysed is not NICE or FUN.

I don’t like to arise pity on people but I have a spinal cord injury that is visible to all; you cannot hide behind a finger and say that not much has changed or even argue that our life has improved.

Often we challenge our limits, not for passion, but just to show others that we are strong. In my opinion this is hypocrisy. I’ve heard a million times outbursts of para & quadriplegics exhausted and frustrated by their situation but they confess to me: ”I have a family, friends, I cannot let them see that I feel bad and I’m not happy. I have to give the example to my children, they should be proud of me and so I want them to believe that I’m strong, I don’t want them to be worried.”

So every morning we dress the mask of the spinal cord damage smiling and active… But it is just a mask.

maschera1

I would like to be able to take it off. I would like to be able to smile fully and realise all my dreams.. But I really want to see the people I love to be happy and not see them suffer for the consequences of my spinal cord injury.

How can we do it?  TO SUPPORT RESEARCH TO REVERSE PARALYSIS AND FIND A CURE.

TELLING OTHERS THAT EVERYTHING IS OK AND THAT WE CAN DO EVERYTHING DESPITE OUR DISABILITY DOES NOT HELP ‘US’!

PLEASE.. I ASK ALL OF YOU… REACT, FIGHT FOR A CURE. A CURE THAT WILL GIVE US ALL BACK OUR ‘INDEPENDENT’ LIFE. DON’T CLOSE YOUR MINDS AND DON’T LOSE HOPE.. ABOVE ALL DON’T WAIT FOR SOMETHING TO HAPPEN.
COMMIT YOURSELF TO TAKE ACTION AND SUPPORT RESEARCHERS THAT WILL HELP US WALK AGAIN. DON’T SIT AROUND WAITING FOR A MIRACLE TO HAPPEN.

DON’T SETTLE FOR ANYTHING ELSE BUT ONLY TO FIGHT FOR OUR LIVES BACK.. OUR INDEPENT, ‘WHEELCHAIR FREE’ LIVES!

Cure Girl Loredana

Loredana: "I'm a Cure Girl"

Le Contraddizioni della Lesione Spinale

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walking on sunshine

Ogni giorno leggo interviste rilasciate da persone che hanno subito una lesione spinale e ogni volta sento ripetere frasi  assurde.

Pur rispettando il parere di tutti, spesso non riesco proprio a spiegarmi come ragionino i para/tetraplegici (me compresa).

È evidente che una  lesione spinale cambia completamente la vita di chi la subisce e delle persone che gli stanno accanto.

Ora, se è vero che siamo sopravvissuti  e che quindi dobbiamo cercare di vivere la nostra vita nonostante tutto (soprattutto nel rispetto di chi non c’è più), è anche vero che “VIVERSI E GODERSI LA VITA DAVVERO” nel nostro caso è praticamente un’utopia.

Quando dico questo la gente che non mi conosce pensa che io sia depressa, che non abbia accettato la mia condizione, che sia una persona sola e mi dice: “Non è vero, nonostante la carrozzina puoi far tutto lo stesso, basta volerlo”.

Cure Girls - On A Mission To Reverse Paralysis - Chronic Spinal Cord Injury Must Become Curable

Cure Girls – On A Mission To Reverse Paralysis – Chronic Spinal Cord Injury Must Become Curable

Se così fosse vi assicuro che in questo momento starei passeggiando sulla spiaggia in compagnia delle mia amiche Cure Girls (e magari anche di qualche bel giovanotto).

Mi rendo conto che la stragrande maggioranza di noi (me compresa) spesso si sente impotente di fronte alle conseguenze della lesione spinale e quindi attiva una sorta di meccanismo di autodifesa.

Non parliamo quasi mai delle reali conseguenze che una mielolesione comporta, e lo facciamo ancora meno in pubblico. L’incapacità di gestire in modo autonomo il nostro corpo spesso ci mette a disagio, ci imbarazza, cerchiamo di nascondere quel che possiamo e lo facciamo per diversi motivi e più o meno inconsapevolmente, forse per non sentirci “compatiti” sperando così che gli sguardi di dispiacere e le frasi di circostanza che ci vengono rivolte diminuiscano e/o ci facciano meno male.

Ma dopo 12 anni vissuti legata a questa sedia a rotelle ho capito che è inutile, chi ci vede e ci ama, si dispiacerà di quanto c’è accaduto. Questa È UNA SPONTANEA REAZIONE UMANA CHE CI PERMETTE DI IMMEDESIMARSI NELLA VITA DELL’ALTRO, frutto di quella consapevolezza che l’essere paralizzato non è bello né tanto meno divertente.

Meno male che esiste questo sentimento, se così non fosse, il mondo sarebbe abitato solo da persone egoiste e cattive.

Non mi piace fare “pena” alla gente…ma ciò non toglie che ho una lesione spinale, questo è visibile a tutti, non ci si può nascondere dietro un dito e dire che tanto non è cambiato nulla o addirittura sostenere che la nostra vita sia migliorata.

Spesso sfidiamo i nostri limiti, non per passione, ma solo per far vedere/credere agli altri che siamo forti.  C’è molta ipocrisia in noi. In questi anni mi è capitato milioni di volte di sentire sfoghi di para-tetraplegici sfiniti e frustrati dalla situazione che però mi dicevano: “Io ho una famiglia, degli amici, non posso far vedere loro che sto male e non sono felice, io devo dare l’esempio ai miei figli, devono essere orgogliosi di me e quindi voglio fargli credere di essere forte per non farli preoccupare etc.”

Quindi ogni santa mattina indossiamo la maschera del mieloleso sorridente e attivo etc.. Ma è pur sempre una maschera. maschera1

Io vorrei poterla togliere, vorrei poter sorridere appieno, realizzare tutti i miei sogni…ma soprattutto vorrei non dover più vedere persone che amo soffrire a causa di una lesione spinale. Come possiamo riuscirci? A mio parere solo RENDENDO LA PARALISI REVERSIBILE, FACENDO SÌ CHE SI TROVI PRESTO UNA CURA.

IL DIRE AGLI ALTRI CHE VA TUTTO BENE E CHE SIAMO IN GRADO DI FAR TUTTO LO STESSO, NON CI AIUTA, TUTT’ALTRO!

Rivolgo quindi un appello a tutti voi:

REAGITE! LOTTATE PER UNA CURA! PER QUALCOSA CHE DAVVERO VI POSSA RESTITUIRE LA VOSTRA VERA VITA INDIPENDENTE!!! NON CHIUDETE LE VOSTRE MENTI, NON PERDETE LA SPERANZA E SOPRATTUTTO NON ASPETTATE CHE GLI ALTRI FACCIANO QUALCOSA, IMPEGNATEVI SE VOLETE DAVVERO SMETTERE DI ESSERE “PARALIZZATI”. NON ASPETTATE IL MIRACOLO, PONETE IN ESSERE AZIONI CHE AIUTINO I RICERCATORI A RIMETTERCI IN PIEDI.

NON ADATTATEVI PENSANDO CHE NON VI SIANO ALTRE STRADE DA PERCORRERE, NON ACCONTENTATEVI DI VITE VISSUTE A METÀ.

LOTTATE PER RIAPPROPRIARVI DAVVERO DELLA VOSTRA LIBERTÀ!

Cure Girl Loredana

Loredana: "I'm a Cure Girl"

There would be no more days like that

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rainbow

Five years have passed. I remember it like it was today. Seeing her euphoric waking up as if she knew that those were her last steps.

Put on her bikini and fixed her wavy hair that was sun bleached from the beach. She made coffee, woke her friends and explained that it was a beautiful day in May and they should enjoy every sun ray. There would be no more days like that. after that day it would be cold, windy, and cloudy at the beach. That was how she saw the winter. And unbeknownst to her that was how the days would become. Even though the winter was over and spring flourished with the most beautiful colors, in her world everything was translated into black and white. The black from the past that moves away at a speed unjust, detaches from the soul memories without the slightest sense.

Arcobaleno di luciLeaving only a scent of what once was. That one day went. In this body I’m not. I’ll never be. As much as dreams are preserved they try to keep alive part of my essence. There are two lives into one. There are two of me and the biggest challenge in life is dealing with longing for myself. It is the most difficult and most incomprehensible part within a single person. That much I can explain but never understand. Black is the absence of light resting from the mixture of all colors. My rainbow is overshadowed .

I was this: many in one . It was light I wanted. I was in a hurry to live. It now remains white uniting all colors and reflects many light rays but doesn’t absorb any. Showing only it’s maximum clarity : the raw target unknown. Ironically, it has all the colors but can’t be any of them. Be everything and nothing at the same time in the same body. Black, shapeless, and flawed is the most perfect translation of what I was. Today my raw form consists of everything but only reflects what you see in me.

Cure Girl Sabrina

Não haveria dia como aquele

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rainbow

Cinco anos se passaram. Eu lembro como se fosse hoje de tê-la visto acordar eufórica como se soubesse que aqueles eram seus últimos passos.

Colocou biquíni, arrumou o cabelo ondulado e queimado da praia, fez o café, acordou as amigas, explicou que era um lindo dia de maio e que devia ser aproveitado cada raio de sol. Não haveria dia como aquele. Depois só frio, praia com vento e dias nublados. Eraassim que ela via o inverno. E sem que ela soubesse foi assim que os dias se tornaram. Mesmo que o inverno terminasse e na primavera florescessem as mais belas cores, no seu mundo tudo era traduzido em preto e branco.

O preto do passado, que se distancia numa velocidade injusta, que se desprende da alma, das memórias, sem a menor sensatez, deixando só um perfume daquilo que um dia foi. Daquela que um dia fui. Em corpo essa não sou mais eu. Nunca mais serei. Por mais que se preservem sonhos, que tente se manter viva parte da minha essência, há duas vidas em uma, são duas de mim e o maior desafio na vida é lidar com a saudade de mim mesma.

Arcobaleno di luciÉ a parte mais difícil e a parte mais incompreensível dentro de uma só pessoa, que por mais que eu explique nunca se entenderá. O preto é a ausência de luz decorrente da mistura de todas as cores. O meu arco-íris ofuscado. Eu era isso: muitas em uma só, não era luz que eu queria. Eu tinha pressa em viver.

Resta agora o branco que faz junção de todas as cores mas reflete tantos raios luminosos que acaba por não absorver nenhuma, mostrando apenas sua clareza máxima: o cru, o alvo, o desconhecido. Irônico ter todas as cores mas não poder ser nenhuma. Ser tudo e nada ao mesmo tempo em um mesmo corpo. Aquele preto, imperfeito e disforme foi a mais perfeita tradução do que fui. Hoje minha forma crua é composta de tudo mas reflete apenas o que você em mim vê.

Cure Girls Sabrina