Does anyone have ideas on how to create awareness and/or educate others on ataxia?
Hi. I live in the UK and have ataxia. I think as many people as possible should email/text/tweet the television/radio stations on the same day and make them aware of the difficulties of suffering from ataxia. I have never seen a single programme or programme-segment on the subject. I presume you are in the USA, it would be more difficult to arrange there because of the size, but maybe it could be arranged to done state or area-wise?
I am willing to try and instigate it in the UK.
Ed. (You or anyone else who thinks this would help can contact me directly on edwihokeefe@yahoo.co.uk
if you find it easier.)
Can we use facebook?
Hi Allie. Just use anything to do the job.
Allie said:
Can we use facebook?
As Ed says "Use anything to do the job"
Awareness of Ataxia is hard as its a raredisease, which not many (no one) has heard of.
In the (US) as in the UK there are some very active people (US - John Mauro http://forum.livingwithataxia.org/video/hank-stolz-interview-with-john-mauro-what-is-ataxia, Jonas Cepkauskas http://forum.livingwithataxia.org/video/the-fight-ataxia-project-walk-this-way-2013, NAF. http://forum.livingwithataxia.org/video/international-ataxia-awareness-day-iaad-september-25-2014-spread
UK,, a few (including me) as I am well know in all Ataxia / Raredisease circles... (Raredisease "Warrior")
I have been on TV and Radio a few times - although it is very though to get "airTime" you have to Keep on, Keeping on
TV for International Ataxia Awareness day 2006 http://www.bbc.co.uk/wales/arts/yourvideo/media/pages/alan_thomas_01.shtml
Findacure workshop http://forum.livingwithataxia.org/video/patient-story-cerebellar-ataxia
Speaking at Welsh Government http://forum.livingwithataxia.org/video/rddsenedd-2013-rough
My mission is to make as many people aware of this "Life-Limiting" condition
Alan Thomas
Ataxia South Wales chairman
Raredisease "Warrior"
I think first need to be able to educate our own families on what is happening to us. So many don't understand or care to learn anything about what we are up against. Every one in a family should take an interest because it may be their turn next.
When someone sits in a chair and pours a bucket of ice over their head about Ataxia it may help... Don't believe that one. I have been asked to do the ALS pledge and I answer with this "do you know what Ataxia is?" not one person can tell me. We are in such a small group along with so many other diseases it will be hard to teach the public.
I am with gelu65 I have a hard enough time educating my family and friends about the disease. The director of one of Salvation Army's educational centers challenged me for the ALS bucket. She knew I had SCA but, had no idea what it was. I asked her what she thought should be done. She said start a movement, charity, medical team, and other ideas. That was a few weeks ago. Havent heard from her since.
We have to start in our community and educate them and hope we can grow from there. Hate to spread doom and gloom but, I gelu65 and I have a good start.
I think that even the doctors that are treating us have no idea what ataxia is doing to their patients or in certain circumstances are not trying to treat symptoms to save money, I think the HMO I belong to is this type of operator. It is very profitable to not diagnose and doctors have to work this way. I think PCP docs are in this category because they are low man on the totem pole. You cant get seen by a specialist without being referred. On top of that you must be seen by the right person or its like no help. You can see the medical community changing the way you get medicated they are trying to stop narcotics by not prescribing them instead of trying to stop the wholesale delivery of drugs to illegal sellers. Now instead of vicodin they just want you to take tylenol which is what is in vicodin that is actually doing the most harm to your body. I have seen my neurologist about 5 times. He has no more interest in his profession except to be the sharpest looking doctor when he gives a speech. He has the air of a plastic surgeon it seems.
My daughter recently did the Ataxia Spinoff Challenge https://www.youtube.com/watch?v=fgjDMTDSAhw, which is an ataxia awareness campaign recently started by the NAF. I posted the video on facebook, but very few people even liked or commented. It is very discouraging. This also happened before when I posted ataxia awareness information. How can we get people to take notice?
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I plan to send press releases to Silsbee Bee, Hardin County News and Beaumont Enterprise next week along with my own profile and hope they will follow up with it. Also contact Beaumont TV stations, use face book, and see if I can get Silsbee mayor and Hardin County Judge to issue a proclamation declaring Sept 25 ATaxia Awareness Day in their jurisdiction. That's the only way I know in US is each person contact papers and authorities in their area as each paper is independent, I think. Also want to get tee shirt from NAF. I was looking at their website today.
I am very lucky to have Dr. Wilmot of Emory here in Atlanta. He is among one of the leaders in Ataxia. After three years he told me there was nothing more he could do. At least I had one of the best tell me. Sorta a finiality to it all. Here is his link:
http://www.vitals.com/doctors/Dr_George_Wilmot.html
gelu65 said:
I think that even the doctors that are treating us have no idea what ataxia is doing to their patients or in certain circumstances are not trying to treat symptoms to save money, I think the HMO I belong to is this type of operator. It is very profitable to not diagnose and doctors have to work this way. I think PCP docs are in this category because they are low man on the totem pole. You cant get seen by a specialist without being referred. On top of that you must be seen by the right person or its like no help. You can see the medical community changing the way you get medicated they are trying to stop narcotics by not prescribing them instead of trying to stop the wholesale delivery of drugs to illegal sellers. Now instead of vicodin they just want you to take tylenol which is what is in vicodin that is actually doing the most harm to your body. I have seen my neurologist about 5 times. He has no more interest in his profession except to be the sharpest looking doctor when he gives a speech. He has the air of a plastic surgeon it seems.
Great ideas. Thank you!
I definitely think that social media (Facebook, Twitter, LinkedIn, etc.) are effective in getting out awareness.
I'm planning on including a link to http://www.mayoclinic.org/diseases-conditions/ataxia/basics/definit... and, of course, the video on the Ben's Friends landing/home page that explains what Ataxia is.
Obviously, Alan your links are helpful, especially for anyone unaware of what ataxia is.
Granny H, that seems so early, but you know what, journalists and reporters usually need that time to put something together. Very considerate of you. Also, how great is that - you're putting your profile, or personal story, along with the press release; and issuing a proclamation for an official day.
And, Jodie, thanks for sharing your video - I haven't seen that yet.
I think what it will take is someone important or notorious to come down with the ailment and then someone to pick up the ball and run with it. There are famous people with diseases out there on TV time and again but they don't even show as ill on TV They may be very ill but at the same time look like they are mainly using illness for a tax write off. When these ill say how much pain they are going through you can judge some of their pain by our own. I know I cant walk right any more but I know what pain is and if I am not getting it as bad as them it seems they are pushing the envelope and hurting the rest of the ill people making them look like malingerers. I have had neuropathy for over 20 yrs and am bothered but don't get all the pain I read everyone else gets.
Audie Murphy had it. Also, not as well know Carlos Hathcock USMC Sniper top gun in Vietnam.
gelu65 said:
I think what it will take is someone important or notorious to come down with the ailment and then someone to pick up the ball and run with it. There are famous people with diseases out there on TV time and again but they don't even show as ill on TV They may be very ill but at the same time look like they are mainly using illness for a tax write off. When these ill say how much pain they are going through you can judge some of their pain by our own. I know I cant walk right any more but I know what pain is and if I am not getting it as bad as them it seems they are pushing the envelope and hurting the rest of the ill people making them look like malingerers. I have had neuropathy for over 20 yrs and am bothered but don't get all the pain I read everyone else gets.
If someone asks "What's that ?" about Ataxia that is a good chance for you to give them a brief description (education) about Ataxia.
Firefox said:
hi,i certainly think that family members need to know about ataxia.in my case my brother and niece don't even have a clue what my condition is called.im the poor one who gets stuck with episodic ataxia,yet my brother and niece don't even bother to ask me about my condition.its only my half sister who takes an interest.when I tell people about my disorder,i just tell them that I have a neurological condition.if I tell people that I have ataxia,they just say whats that....
I like that Mayo Clinic link. Will definitely share it on facebook and elsewhere to educate family and friends.
Glitter on Butterflies said:
Great ideas. Thank you!
I definitely think that social media (Facebook, Twitter, LinkedIn, etc.) are effective in getting out awareness.
I'm planning on including a link to http://www.mayoclinic.org/diseases-conditions/ataxia/basics/definit... and, of course, the video on the Ben's Friends landing/home page that explains what Ataxia is.
Obviously, Alan your links are helpful, especially for anyone unaware of what ataxia is.
Granny H, that seems so early, but you know what, journalists and reporters usually need that time to put something together. Very considerate of you. Also, how great is that - you're putting your profile, or personal story, along with the press release; and issuing a proclamation for an official day.
And, Jodie, thanks for sharing your video - I haven't seen that yet.
Very good point.
I’m seeing (and experiencing) a theme. Maybe different messages are needed or maybe just a variety of audiences: -friends and Family, -Medical Community, -the general public, etc.