25 December 2013

Is CDRF listening? Maybe, just maybe, they are.

SCI won't be cured by hyped up language but by science and the active involvement of those living with the horrors of paralysis and their supporters.

In November, I wrote an email to Mr. Peter Wilderotter the CEO of the Christopher and Dana Reeve Foundation (CDRF) in regards to a hyped up fundraising email which claimed that CDRF was, “Successfully getting people out of wheelchairs right now. Today, it really is a reality.

Now, I don’t know about you, but when I hear statements like this it sounds like people are getting out of wheelchairs for good. A look through the research and what I find is that while it is helping people improve balance and even some ambulation; these same people are still using wheelchairs. Unless you try to be literal about it, this is not, “getting people out of wheelchairs,” in the way that most regular people would understand it.

I don’t like claims like this because they spread false hope especially amongst the newly injured and I told this to Mr. Wilderotter. I asked for an apology, but I think I got something much better. Looking at their next fundraising email, there was a fundamental difference in tone.

I’m heartened by the fact that maybe foundations do listen a little (after three years of campaigns aimed against this kind of behaviour).

This time, instead of making such broad sweeping statements that have no educational value whatsoever, Mr. Wilderotter listed three things that CDRF is working on which he thinks is important to both care and the future of cure. I would have liked some links in the email so people can see exactly what he’s talking about, but it’s a lot better than saying, “getting people out of wheelchairs right now,” without explaining the whole story.

To tell you the truth, I actually disagree with the importance of some of the three things Mr. Wilderotter raised, but guess what, I don’t mind disagreement. They don’t have to agree with me and I don’t have to agree with them. What I wrote to Mr. Wilderotter about was not disagreement over the statement, “Successfully getting people out of wheelchairs,” but that this statement is misleading, spreads false hope and miseducation, and makes people think that cure is much closer than it actually is. In the end, their message said, don’t worry about getting involved in cure, send us money and we’ll deal with it as we’re already getting people out of their chairs.

This is the wrong message. I hope CDRF does more in the future to involve those of us in chairs because I think it will help us all get closer to cure, but in the meantime, I’m happy that we MAY have sent CDRF a strong statement against wild comments that do nothing to bring us closer to cure.

Thank you Mr. Wilderotter (and I really do mean this).

PS. I spent some time this morning removing Bob's accusatory comments and the responses that others have made because they are pissed off with Bob's unending off topic comments about Dr. Wise Young.
From now on, false and/or off topic comments won't be allowed and this will stop the mean comments against Bob and his son (who doesn't have anything to do with this).

I understand that this is an emotional topic, but it gives no one, not even Bob, the right to make statements that they cannot back up.