26 May 2011

When people learn to spit together, they'll make a tidal wave

These are the results from a small poll I conducted. You can find the poll here.

I know that some are going to say that it's a pretty sad result. Only 104 responses? Only 43 people left contact details? I'll answer them that it's got to start somewhere. Working as a union organizer I have been to many meetings with only me. Have stood out on very cold nights in front of workplaces to hand out leaflets just to find out no one was interested. Hell, I've even traveled two or three hours to organizing meetings which were attended only by me.

I'm from the three is better than one club, so I am very happy that this first group has come forward. It will take time for us to get on our feet, but we'll get there. I heard a quote once in a movie, but I don't remember what movie and it went something like this: "When people are learn to spit together, they'll make a tidal wave."

The comments are unedited and in them I'll hope you'll find some good ideas for future activities and also see regular people's raw passion for getting out of their chairs, and the barriers that they believe are stopping them. Some of these feelings may shock you.

So without further adieu. The survey says...

104 Responses.

Question 1. Which statement best describes you?
73.02% have a spinal cord injury.
22.22% have a close family member or friend who have a spinal cord injury.
4.76% don’t really have any close connection to those with a spinal cord injury.

Question 2. Do you believe that finding a cure for paralysis caused by damage to the spinal cord is possible within the next five to ten years?
78.46% YES
4.62% NO
16.92% Undecided.

Question 3. What do you think is standing in the way of a cure for paralysis at the current time? In order based on the most responses:
Lack of government funding.
Lack of collaboration amongst scientists.
Lack of unity within SCI community.
Failure of the big Spinal Cord Injury/Paralysis groups to fund clinical trials.
Lack of the science necessary to cure paralysis.
I don’t know.

Question 4. What other things do you think are getting in the way of a cure for paralysis?
l  egos
l  not as many clinical trials as there should be
l  FDA and other regulatory agencies
l  the religious right wing fanatics
l  Most people (political leaders, industry leaders, do-gooder celebrities, doctors and just "people") don't care. Curing paralysis is very low on the list of priorities.
l  funding funding funding
l  Visibility , there walks for breast cancer, autism, Alzheimer’s AIDs.
l  Greed. When a wheelchair costs $4500 plus $1500 for wheels plus drug companies’ stand to lose money if a cure is found. They'd rather "treat" than "cure"
l  religious ignorance, apathy
l  Lack of young students entering neuroscience. Lack of wealthy people sympathetic to the course.
l  It is not a priority for the majority of this country (USA). Politicians want to be in office and we (SCIs) are a huge minority compared to other groups to lobby for.
l  more strong international communication between people, scientists and relatives but most of all priority to the governments and medical community
l  press stories showing sci victims as happy with their lives and inspirational. Someone should do an interview asking Rick Hansen about his bowel program or his lack of sexual function...
l  Fear of failure by scientists and FDA, when, failure is the greatest teacher.
l  big picture is missing + lack of somebody making the decision, as explained in your blog, to cure paralysis. brain paralysis of sci community. lack of a big guy or big guy's daughter's breaking his/her neck
l  Courage
l  Small sci community, making them not a very profitable venture to find a cure by commercial entities. Thus, we really need to engage government to fund sci cure efforts
l  Push from our nations leaders to make cures for paralysis a priority.
l  The common idea that it's just sitting in a wheel chair doesn't help. Most people with no knowledge of the problem can't even imagine the threats to health faced by wheel chair users.
l  Society doesn't view it as a problem that needs attention, like say it views breast cancer.
l  our.handicap isn't and won't be considered a priority because it only affects a minority of people
l  It's not a priority because we can keep people alive whether or not they are cured.
l  the movement to stop stem cell research, but I hope that is over now.
l  too many chiefs, not enough Indians.
l  The government wanting more and more research on rats, mice, etc.. The research needs to be on humans and there are a lot of willing humans.
l  religious, closed minded for stem cells
l  Spinal cord injury doesn't get enough attention as does cancer etc.
l  Most of the scientific research is made by private companies and they don't have enough interest in finding a cure.
l  The Government FDA people are afraid to work to get money for research
l  no backing from any governments
l  No balls.
l  politics and religion!!!!
l  funds directed into different areas of interest, And not enough focus on science as a whole Also to many small goups doing the same goal instead of combining resources and countries that could essentially provide the same service but cheaper and i am referring to trials. eg: one English pound to $2.5 dollars aust therefore stop thinking boarders but humans
l  religions

Question 5. What do you think of the following statement? "The fact that not one government in the world has made a cure for paralysis a national priority is holding back a cure."
72.58% Agree
8.06% Disagree
19.35 % Undecided

Question 6. Would you personally be willing to involve yourself in making a cure for paralysis a national priority in your country?
60.00% YES
5.00% NO
35.00% I’d be a willing supporter

Question 7. What activities do you think would be effective in making a cure a national priority in your country AND that you would personally involve yourself in? (write as many things as you want).
l  Kick the asses of: SCI Organisations FDA/EMA/NICE etc Egotistic scientific advisory board chairman Spinal Injuries Associations Clinicians who hide behind false hope Veteran SCIs who block the path with their negativity
l  $
l  Fundraising, awareness, more clinical trials, Gov't involvement
l  same approach as breast cancer is taking
l  Neutralize the opposition of my national SCI org. The rest will be easy.
l  we need a HUGE showing in WA DC, a rally where we could meet with politicians, be seen on tv, chain ourselves to the one of the national monuments
l  Lobbying the government to provide funds and resources to top medical scientists who are committed to finding a cure (such as Wise Young) Recruiting large numbers of researchers to work under these leading scientists. Educating both the public and the medical profession about the work that has been done so far and the progress that has been made. This could be done by public service advertising for the general public and through the traditional channels for the medical profession (symposia, articles in medical journals) as well as through "ambassadors" from the spinal injury community: people living with SCI and doctors/scientists working for a cure. We need some people to give a "face" to SCI, to remind the public and the medical profession every day that people are suffering and that a cure is possible given adequate funding, effort and commitment. I would involve myself in any and all activities to contribute to making a cure a national priority.
l  justadollarplease.org, scinetusa.org and. writing my local members in my community in Texas
l  We need to be seen.
l  Take the $14 million going to some jackass politicians severance package when he gets voted out and put that money towards research and testing.
l  prominent spokespeople, annual events
l  National telethon..... Percentage of road traffic fines go directly to funding clinical trials.
l  I think it will unfortunately take a high level public official (ie President, VP, etc.) to have a family member suffer a SCI.
l  keep on talking about it, everywhere and with everyone! people have to be informed to act!
l  giving (insert name of conservative billionaire here) an sci. this will be done in 2 years.
l  for the SCI community to unite and make it happen
l  Scientists involvement in politics and creating public awareness of science breakthroughs. Celebrity involvement with SCI issues. Physicians becoming aware of SCI research and their involvement in creating public awareness with patients and politicians.
l  I am a scientist working on this field.
l  Promoting awareness that sci can happen to anyone - Get sci patients on national channels and tell the audience true stories abt how injury happened, how difficult to live at the moment with all the problems (rather than miracle stories about someone walking which don’t do sci any favour as then everyone thinks that all is takes is hard work and determination - which is not true) - dedicating free off-work hours in promoting awareness - in pubs, public places etc and based on this open up very aggressively campaign to promote finding a cure.
l  meeting with leaders. Media exposure.
l  I don't think it’s a reasonable goal.
l  Those who are injured and family members need to get more organized and vocal.
l  I'd like to go to the next March on Washington, with my paraplegic son.
l  advocating for free rehab.
l  a sharing of information, lab data, facilities and a strong combined team effort across oceans borders and continents. many scientists are spending as much time and energy wooing their governments for money as they are researching.
l  I really don't know the answer to that, but I would do whatever I could to help!!
l  Just a dollar.org
l  awareness
l  Lobby Parliament and need national advertisement campaign to show the population the pain and distress spinal cord injuries cause patients and their families Show how a cure will save enormous amounts of money now spent on caring for patients
l  Spreading as much information as possible to make people aware of this important matter.
l  Spinal Cord Telethon
l  Suicide in public.(burning)
l  religion, big pharma, nih, fda, scrm, need to get their act together ASAP
l  advocate to all government and organized bodies
l  Walks and one unified website

Question 8. How much time could you personally give each week to making a cure paralysis a national priority?
27.27% 1 to 5 hours per week
9.09% 5 to 10 hours per week
3.64% 10 to 15 hours per week
5.45% 15 to 20 hours per week
1.82% 20 to 25 hours per week
3.64% 30+ hours per week
49.09% I don’t know but I’d be a willing supporter

Question 10. Where do you live? (Those who answered the question).
1 Australia
3 Canada
1 Denmark
2 France
1 Hong Kong
3 Italy
2 Japan
1 Unknown
1 Spain
1 Taiwan
4 UK
22 USA

Question 11. Email addresses
43 people left their contact details

Question 12. Anything else you want to say?
l  Hope this goes OK.
l  I have no idea what needs to be done. Tell me how I can help and I will do my best.
l  Cure the paralysis
l  i want out of this wheelchair asap
l  For the past 19 months I have been caring for my son (C5-6 injury) and have not become involved in any efforts to raise funds, raise awareness or do anything else to contribute to finding a cure. My son will continue to take up much of my time, but I want to help. Please get in touch by email.
l  Get involved and help bring a cure to people living with spinal cord injury!
l  Let's move ahead
l  Keep up the good work fella. Let's fire this up.
l  god bless all of us.
l  This is a great start, let’s hope it goes somewhere productive to SCI cure.
l  never lose hope
l  i don't really have much time to spare, but i can send cash when you get a plan together.
l  very good questionnaire Dennis remarks- curing in 5-10 years: i believe some level of recovery is possible. -about country action: i am in exile in NL, so difficult to act for France, and i feel i can have a better role on global matters. on time spent: hopefully i can increase the amount of time available for sci cure soon.
l  Thanks for putting so much work into this. I really hope this can translate into something meaningful. I’m willing to support as much as i can.
l  Thanks for your involvement.
l  I think that research should avoid tunnel vision. I have maintained a positive attitude to stem cell research, because I feel it has so much to offer. However, SCI treatment, I think, should not be seen solely as a stem cell issue.
l  keep the faith and let's work together to find a cure
l  Great poll, Dennis. Eager to see the results.
l  I said I would be a willing supporter-but I would be a doer if I knew what to do. I'm trying to win the lottery to donate to SCI research, but you know my chances at that, about as good as my being rich on my own.
l  On any given day I could answer most of these questions differently. Every time I think about the realization of a cure for paralysis I get the feeling that there is something missing from all the processes we try to get there. I just don't know what that missing element is.
l  its gonna take the whole paralysis community to make it possible
l  Thank You!!
l  My daughter was injured at 10 years of age.
l  Every single person can make something to achieve this goal. Let's do it!
l  i already place a raffle to raise money for Spinal Cord Society
l  good luck man hang in there lots of hope here. Hopefully the fda/nih will fund more research. politics and religion need to realize how backwards tehy are being. stem cells have so much potential. have your heard of the single blastomere technique? it derives one cell from a very young embryo. the embryo continues to grow regardless of the missing cell. check it out, advanced cell technology and robert lanza. seems like hsec could be a good answer but nih/fda/religion/courts are hindering progress. ...but i think we will see some amazing cures within this decade. best of luck!
l  yes help get me out of this chair and walking and using my hands before 2020
l  hope something happens soon

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