Dear Ms. Gross:
Thank you for your questions. Your question regarding research, this link
will provide you with information on the NAF funded research efforts
currently underway http://www.ataxia.org/research/naf-research-2013.aspx.
Results of these studies will be published in NAF quarterly news
publication, "Generations" once the studies are completed, as well as
various medical journals. This National Institute of Health link will also
provide you with publicly and privately supported ataxia studies here in the
United States and in other countries
http://www.clinicaltrials.gov/ct2/results?term=ataxia&Search=Search. The
bottom line for research is funding...regardless if it is ataxia or any
other disease or disorder. The more funding to support promising research,
the quicker we will find answers to end ataxia. Your question regarding Las
Vegas...the 57 NAF Annual Membership Meeting will be held in Las Vegas
Nevada on March 21 - 23, 2014. More details will be available soon on NAF's
web site. Las Vegas was selected based on a number of factors including
accessibility (54 ADA roll-in shower rooms at the conference hotel), many
non-stop flights, room rates, weather in March, as well as the Western
Region Support Groups will be hosting the conference. The National Ataxia
Foundation is a membership supported nonprofit organization governed by a
volunteer Board of Directors and advised by a volunteer Medical Research
Advisory Board. More information about the National Ataxia Foundation and
ataxia can be found on our web site www.ataxia.org. Again, thank you for
your questions.
National Ataxia Foundation
Thanks Neta its good to get solid information. Got in contact with my mate in Australia who is going to run a marathon for ataxia research. Just hope its still light when he finishes
Punk, ( I am sure you have a normal name like Ian or Edward),
I wish your friend luck in Kangarooland. My friend Jeanette's, elderrly Dad (a retired cadiologist) just died in Melbourne. I just wish there was some simple site which had the latest advances and most useful exercises. There is alot on line but so much is contradictory. Like one site says a drug called amatadine is very useful in getting rid of the swaying sensation; another says the opposite. I am flying to London for a long weekend (next week) and I am nervous. I guess it's better than going to Egypt. N
Punk said:
Thanks Neta its good to get solid information. Got in contact with my mate in Australia who is going to run a marathon for ataxia research. Just hope its still light when he finishes
Neta, I asked my neurologist recently about Amantadine and he said it is for Parkinsons disease.
Thanks for publishing the response from the NAF to your letter. It is good to know that NAF is run by volunteers, whether administrative or medical staff, because volunteers usually are devoted people who really want to help a cause without demanding rewards, whether monetary or other.
Have a good weekend in London!
I have booked for my attendence at the NAF conference
It is good to know there is an increasing awareness of Ataxia
Neta my thoughts on the matter are exactly the same its horrible not knowing what the future holds or how far or near they are to treatment. It is difficult when doctors don't recommend anything. As a very strong atheist I don't pray to anyone or ask for help from a higher being because I wouldn't get answers anyway, but if I have faith in anything it is science. I just wish I knew a bit more of what they are up to. Knowing ataxia is incurable should make it easier to accept, but for me knowing they are on the right road to treatment gives me hope and torments me because it could be a year or ten. I am consumed at times with anger that this has happened, but there is no one to be angry with. Everyone must keep going and stay as fit as possible. I am sure you will enjoy London, I have been many times, the first was when I was 17 and went to see the Clash. Have you magic powers? coz my name is Ian Ward
Indeed, I wish there was more clarity on the issue. Frankly, I have a bad feeling about the NAF. I read that
they were established in 1957 and are supposedly still looking for a treatment !! This puts them in a league with the Salk vaccine! Also, its not true that all their helpers are volunteers. Their tax returns do show several paid employees. Maybe I am barking up the wrong tree, maybe not. Maybe it's time to get someone in Congress involved or the media? What makes me angry, is that everything has to be done by the patient and there is no central address for questions. I haveno magic powers. I pulled your name out of a hat. Ah but can you guess mine? Not so easy. It's not Rumplestilskin. I was in London last in 2000 and in 1972 before that. But it was a different world then. N
Punk said:
Neta my thoughts on the matter are exactly the same its horrible not knowing what the future holds or how far or near they are to treatment. It is difficult when doctors don't recommend anything. As a very strong atheist I don't pray to anyone or ask for help from a higher being because I wouldn't get answers anyway, but if I have faith in anything it is science. I just wish I knew a bit more of what they are up to. Knowing ataxia is incurable should make it easier to accept, but for me knowing they are on the right road to treatment gives me hope and torments me because it could be a year or ten. I am consumed at times with anger that this has happened, but there is no one to be angry with. Everyone must keep going and stay as fit as possible. I am sure you will enjoy London, I have been many times, the first was when I was 17 and went to see the Clash. Have you magic powers? coz my name is Ian Ward
Ataxia must drain your confidence and getting from a to b just isn't a matter of doing it, because everything has to be thought out. Try and enjoy London. Annett Gross?
It does. It's Netty. Can you believe it? I am named after my grandmother whose name was Nathalie and lived for a while in London where two of children died of a plague. There must have been a flu of some sort at the turn of the20th century. My parents, Belgians, thought Netty was more American. Were they dreaming? Everyone in my class was Linda, Barbara, Susan, Kathy, Judy or Debbie.
I am travelling alone. Oh well, I guess I can always ask police for help. I just did my half hour of running so I am dripping.
Punk said:
Ataxia must drain your confidence and getting from a to b just isn't a matter of doing it, because everything has to be thought out. Try and enjoy London. Annett Gross?
Everyone has an interesting story to tell
http://www.medicineatmichigan.org/magazine/2011/summer/wherecures/
Here is an interesting article to give you an idea about why it takes so long for cures and new medications approval… Something to think about.
Hope this link works.
Righto!
Punk said:
Everyone has an interesting story to tell
Hi Cicina!
Thank you. I think the last paragraph says it all. The gulf between academic and corporate
cultures is wide. Something has to give. xB
Cicina said:
http://www.medicineatmichigan.org/magazine/2011/summer/wherecures/
Here is an interesting article to give you an idea about why it takes so long for cures and new medications approval... Something to think about.
Hope this link works.