I read in the recent NY Times magazine that breast cancer"pink ribbon" awareness campaign has succeeded but alot of people are disappointed that there is no cure for the illness. It describes doctors and pharmaceutical firms (research is too mouse oriented) on the side of greed, just looking for the best way to enrich themselves and "concerned organizations" with highly-paid executives deliberately not looking for a cure in fear of losing their job. I hope this is not the case with ataxia. Is it? Actually, who is on the board of this group and how much are they paid??N
I have no doubt that you are all a-1 and are wonderful. But I think ataxians have the right to know in a concise, clear language what is going on in ataxia and how much money has been spent so far and by whom. I checked, I think, the government (USA) site. Various research conducted in the past few years is not published--what does that mean?? Nor is there simple information on how to join a research project..May I remind anyone that the current Nobel Prize winners for medicine "rediscovered" their work in stem cell research done years ago The info about ataxia per se, seems scattered all over the world with British and Japanese and European researchers doing their own thing. Do these people communicate? I think there is alot of confusion. Some say a cure is just around the corner, others say dr.s haven't a clue. What's going on aside from (to borrow a phrase) "feel-good" advice? N
John "JC" Colyer said:
We all volunteer as moderators
It's all very confusing,especially if you read the papers;one minute there is a cure for some things then the next day there isn't.I am learning not to believe what I read,maybe it depends whaat we read.There seems to be a huge variety.
It would do the unaffected part of my brain in,if I thought we were only physical .Sometimes I feel as if I am on an emotional roller coaster.
Yes, interesting and frustrating subject. I dont like to 'question' the amount of money spent on research, especially as the majority has been raised with donations and fundraising events.
So many volunteers and fundraisers do such a great job and without actually understanding how they 'operate' I dont feel qualified to criticise.
However, I personally feel that more should be allocated to encouraging and assisting people to get to a support group or any other event that would improve their quality of life and ease their isolation.
I run a local ataxia support group and many of my members are unable to get to the meetings mostly due to lack of transport. I do send a monthly newsletter to keep them all 'in touch' but I know they would benefit more from being able to attend the meetings at least once a year.
Take care,
Patsy
I watched your blog. Let's fight, fight, fight. N
John "JC" Colyer said:
Here's blog post I made
Hi JC,
I just watched your blog. Being at peace with yourself is an important part of the fight.
best regards
Beryl
John "JC" Colyer said:
Here's blog post I made
This is a BIG issue that is thought about by many patients, whatever the condition.
We must all understand that their IS research going on CONSTANTLY, even if we are not aware of it (communication within all medical circles, is very inconsistant)
Keeping contact with members of support groups, branches etc. is a very vital part of a support network.
Many SUCCESSFUL networks (including LWA) are run by Volunteers - Patients helping Patients
Alan
You all bring up very thought provoking points. I hope that current research will lead to a cure someday, although I don't know how the average person can understand all the information that's out there. I realize there's a lot of research being done in different parts of the world, and also wonder if there's any sense of coordination between the researchers. It's quite confusing! That's why I rely on sites like this for updated information and support for ataxia! ;o)
My Neurologiist said there was a lot of research going on but we(the patient) don't hear much about it.
I am hopeful of treatment someday but am unsure if the right information is being shared between the right people. I think there are alot of desperate ataxians out there who get drip fed information. Is treatment possible in the near future or is it all just pie in the sky? To me its like trying to win the lottery without knowing the odds and we all know how hard that is. The people with the least information are the most inportant, the ataxians themselves
I just went to your web site and listened to what you had to say JC. You make many good points. You are so right in saying you can not be at war with yourself, and I think that it does everyone good to realize that even though Ataxia should never be taken lightly, ours is not the only disease out there. . Congratulations on a job well done!
John "JC" Colyer said:
Here's blog post I made
I watched your video J C, very inspirational! Thanks for sharing! ;o)
I agree with your comments.totally. I read all this stuff about the brain and AC and doctors look like I landed from the moon when confronted with new info. Huge gap in info. N
Punk said:
I am hopeful of treatment someday but am unsure if the right information is being shared between the right people. I think there are alot of desperate ataxians out there who get drip fed information. Is treatment possible in the near future or is it all just pie in the sky? To me its like trying to win the lottery without knowing the odds and we all know how hard that is. The people with the least information are the most inportant, the ataxians themselves
I firmly believe this....WHY !!!!!... greed....
Thank God that Banting and his discovery of insulin weren't on board.
MaryElena
I posted in the'blog" categry rof this site, an informative post from UK Ataxia group. The author lists various advances in the disease. I don't know if this is more pie in the sky,or for real. N
Lassie-Elena !!! Mary-Elena said:
I firmly believe this....WHY !!!!!... greed....
Thank God that Banting and his discovery of insulin weren't on board.
MaryElena
neta said:
I posted in the'blog" category of this site, an informative post from UK Ataxia group. The author lists various advances in the disease. I don't know if this is more pie in the sky,or for real. N
I agree with your comments.totally. I read all this stuff about the brain and AC and doctors look like I landed from the moon when confronted with new info. Huge gap in info. N
Punk said:I am hopeful of treatment someday but am unsure if the right information is being shared between the right people. I think there are alot of desperate ataxians out there who get drip fed information. Is treatment possible in the near future or is it all just pie in the sky? To me its like trying to win the lottery without knowing the odds and we all know how hard that is. The people with the least information are the most inportant, the ataxians themselves
I know about the trials in Italy regarding Lithium that was finished in December 2012 but when is it likely to hear any news? Also the work being done at Dundee Uni, are there any updates from there? I fully understand that people cant give false hope but i am sure there are ataxians who are running out of time. Is there a real chance of something in say 5 or 10 years.
Ataxia uk stated they hope to find a cure for one or all the ataxias by 2020 wich sounds realy prommising, so they must no something that gives them that hope. I think sometimes people just need to have a bounce put back in their step. It is hard because of false hope but knowing they are near something regarding treatment never mind a cure would be something special, dont you think? Love to all the ataxians out there
Please correct me if I'm wrong Punk, but I read (somewhere?) that the trials on Lithium were unsuccessful. I've heard nothing about research at Dundee, University. Also, I had no idea that Ataxia UK hopes for a cure by 2020! That would be amazing, if true! Yes, I agree, even "hearing" news would be great! Coordination regarding research, and posting of results (if any) would be so helpful to all with ataxia. Not to be pessimistic (as I always try to look at the glass half full. rather than half empty), but I guess that's too much to ask...,ha! ;o) Seriously, I wish things were different!!!
That's exactly what I mean Rose, if the trials on lithium were unsuccessful I would rather know the information more easily, Your point about coordinating research and results would be fantastic. Say a site that is easily accessed with all the relevant information. I understand its hard to be let down, but knowing there is something going on can give so much strength to ataxians
Yes, I definitely agree with you, Punk! I would love to know what's going on and/or results of research, even if the news isn't positive! In a perfect world..., ;o)