--- In fshsociety@yahoogroups.com, "will_sheffey" <wsheffey@k...>
wrote:
>
>
> Has anyone heard of new drug trials or therapies for FSHD?

One trial that I am excited about is for Myostatin Blocker or
Inhibitor.  It is due to start in January and thanks to Dan's
efforts, FSHD will be one of two Dystrophies it will be tried on.

Other trials can be seen at:
http://www.mdausa.org/research/ctrials.cfm

Paul

--- In fshsociety@yahoogroups.com, "kraut_chris21" <rockalewski@w...>
wrote:
>
>
> hello everyone!
>
> although i didn't really get what happend to the "original"
newsboard,
> i'm glad to see our forum online again.
>
> i hope all the knowledge, feelings and support that we collected
over
> the years didn't go down to rest at the electronical cemetary..
>
> greetings,
>
> christoph

Good point, Christoph.  Dan, Carol:  If you ever find David, that
would be a good question to ask him.

Paul

--- In fshsociety@yahoogroups.com, "fshsociety_carolperez"
<fshsociety_carolperez@y...> wrote:
>
>
> Welcome to the Facioscapulohumeral muscular dystrophy (FSH) Society,
> Inc. Board and Chat.
>
> We are back and invite you to join us.
>
> Carol Perez, Executive Director
> FSH Society, Inc.

Thank you Carol.  And thanks to Dan for getting this board started.

Paul

PS  Isn't great to have The Donald poking his face onto our screens?
Well, maybe not.  :o)

--- In fshsociety@yahoogroups.com, "Kathy Circle" <zanni@m...> wrote:
>
> Zanni here.  I know I have not been around for a long time, but I
was just thinking about you all today and then I got the notice of
this group.  I'm in grad school now and that takes up much of my
time.  I am giving a presentation for my class about the genetics of
FSH.  I also went to a talk last week given by a respiratory
researcher who studies MD in animal models.  She had some interesting
things to say about some of the effects of MD on other things besides
just muscle.  She is going to send me some her research, so I'll let
you know what I find out.
>
> One thing I thought was interesting was that in her animal models,
individuals with MD also had lowered levels of T3 thyroid hormone.
Quite a few years ago I was diagnosed with hypothyroidism.  I am
going to check with my doctor to see what for sure the lab results
were.  So anyone else have hypothyroidism?  I would be very
interested to know.
>
> Lastly, has anyone here tried  Alertec/Provigil?  I am always tired
and was wondering if anyone has found this to be helpful.
>
> Talk to you all again soon.
> --Zanni
>
> PS- I'll probably be more active if this stuff is coming directly
to my mailbox.

Welcome back, Zanni.  We have missed you.  Don't be a stranger.

Paul

PS  What are you studying?
___________________________________________________________
> Sign-up for Ads Free at Mail.com
> http://promo.mail.com/adsfreejump.htm

Its good to be back on the board again

I had wondered why I had not  recieved any messages on FSH subjects
then I came across  the switch to yahoo. why the switch?


Richard from BC interior

Hi all,

Hope all is well with everyone.  Just testin' the new board....


Drew

Good Morning Everyone,

It is good to see the board up and running again.  Some sunshine in
the day to see familiar faces.  Going to take some getting used to the
new names.

Take care and hugs,
Dawn in Vancouver

Can we use voice or not ?

Hi everyone.

I'm Amir from Toronto. It is nice to have this group at Yahoo as it
is more accessible.
I have a comment on Liposuction for the abdominal area as some of you
may have thought about it too.

Well, I'm 30 now and have been thinking about it for a few years.
Finally, I went to see two cosmetic surgeons last month and both of
them told me that Liposuction would not help me much. One mentioned
that the fat is actually placed at inner layers and only shrinks by
diet and exercise. But as you may know the muscles in that area are
too weak for almost any kind of exercise (anyone has the same
problem?)

Any comments on this would be appreciated.

Thanks

Amir

I finally figured out why I could not post here.  I had to turn off
my fire wall in order to register in Yahoo.

Anyhoo. Here I am, I hope, and there you are.  I have been reading
your messages.  I have missed you guys.  I have been feeling bereft
of something essential in my life - interaction with you guys.

One would think that after such a long absence I would be crammed
full of things to say, but at the moment I am coming up empty.
Except I want to say "Welcome back" to everybody...and to me.

Paul

ya





---------------------------------
Do you Yahoo!?
  Yahoo! Mail - You care about security. So do we.

[Non-text portions of this message have been removed]

This is the abstract I was talking about.  Pay attention to the CONCLUSIONS
section at the bottom.  I will give you a break down of exactly what this says
sometime after my semester is over if the society newsletter does not get to it
first.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed
--
___________________________________________________________
Sign-up for Ads Free at Mail.com
http://promo.mail.com/adsfreejump.htm

I just came across a paper published in August in the journal Neurology that
demonstrated that albuterol does increase muscle in patients wit hFSH.  I have
just read the abstract so far, and I will get the paper soon.  I plan on
presenting the info to my MD doc.  I also plan on collecting all of the research
out there and presenting it in a lay person format so everyone can know what is
going on in research.  There are quite a few new papers out there.  When I get
my stuff written up, I will post it here.  My plan is to present the research so
that anyone can understand it.

I am a grad student in molecular biology, so I know a bit about this stuff.  I
keep getting pulled back in the direction of doing FSH research no matter how
much I try to go in a different direction.  I'm rethinking my future career once
again (sigh).
--
___________________________________________________________
Sign-up for Ads Free at Mail.com
http://promo.mail.com/adsfreejump.htm

Please add me to the group message board to enable me to post/read.
Thanks,
Steve


---------------------------------
Do you Yahoo!?
  Meet the all-new My Yahoo! – Try it today!

[Non-text portions of this message have been removed]

Glad to see the board up and working ! Hope all the society members
find our new home here!
steve

Has anyone heard of new drug trials or therapies for FSHD?

Hi everyone.  Thanks Dan and Carol for getting us up and running
again :-)

Now we have to figure out how to resurrect the Sunday chats....

Ray

hi the all fsh'ers,
it is nice to meet here again..

--- In fshsociety@yahoogroups.com, "Kathy Circle" <zanni@m...> wrote:
>
> Zanni here.  I know I have not been around for a long time, but I
was just thinking about you all today and then I got the notice of
this group.  I'm in grad school now and that takes up much of my
time.  I am giving a presentation for my class about the genetics of
FSH.  I also went to a talk last week given by a respiratory
researcher who studies MD in animal models.  She had some
interesting things to say about some of the effects of MD on other
things besides just muscle.  She is going to send me some her
research, so I'll let you know what I find out.
>
> One thing I thought was interesting was that in her animal models,
individuals with MD also had lowered levels of T3 thyroid hormone.
Quite a few years ago I was diagnosed with hypothyroidism.  I am
going to check with my doctor to see what for sure the lab results
were.  So anyone else have hypothyroidism?  I would be very
interested to know.
>
> Lastly, has anyone here tried  Alertec/Provigil?  I am always
tired and was wondering if anyone has found this to be helpful.
>
> Talk to you all again soon.
> --Zanni
>
> PS- I'll probably be more active if this stuff is coming directly
to my mailbox.
> --


Hi Kathy,

RE: lower T3 thyroid hormone.

When I was 34, I'm 40 now, I was placed on thyroid replacement
hormone.  It didn't help with the fatigue orfeeling cold but taking
the replacement did stop the weight gain.

I don't know of Alertec/Provigil.  But my Doctor sent me in for a
blood test on the levels of Carnatine before he will give me a
prescription (I am in Canada and L-Carnatine isn't considered herbal
or food supplement)  I looked up levo-carnatine the pharmaceutical
guide, and one of the warnings was to monitor Thyroid levels because
it has been know to lower them.

Looking forward to reading your friends research notes on MD.

Regards,  Rebecca from
Victoria___________________________________________________________
> Sign-up for Ads Free at Mail.com
> http://promo.mail.com/adsfreejump.htm

Hi! I stumbled upon this site while doing a paper for my genetics
class. I have fsh and am excited to see that 44 other people do,
too. I was wondering if any of you have tried albuterol or know any
doctors who are using it to treat fsh? i've been reading that
they're still studying it but it sounds interesting.
Susanna

I have not heard about those 'drugs?', but I was looking for
something to help with my energy.  About 12 months ago, my
acupuncturist introduced me to a herbal tomic called KM.  It is
manaufactured in Canada.  The best way to describe it is as a
potassium supplement.  I tried it for a while and it seemed to put a
little bounce in my step.  I quit taking it for about a year and
just started again a month ago.  Wife has noticed her charming
husband once again.  Not sure of why the tomic makes me feel good,
but I do feel like enjoying life more than I had.  If you want more
information, I can point you to a couple of websites.
--- In fshsociety@yahoogroups.com, "Kathy Circle" <zanni@m...> wrote:
>
> Zanni here.  I know I have not been around for a long time, but I
was just thinking about you all today and then I got the notice of
this group.  I'm in grad school now and that takes up much of my
time.  I am giving a presentation for my class about the genetics of
FSH.  I also went to a talk last week given by a respiratory
researcher who studies MD in animal models.  She had some
interesting things to say about some of the effects of MD on other
things besides just muscle.  She is going to send me some her
research, so I'll let you know what I find out.
>
> One thing I thought was interesting was that in her animal models,
individuals with MD also had lowered levels of T3 thyroid hormone.
Quite a few years ago I was diagnosed with hypothyroidism.  I am
going to check with my doctor to see what for sure the lab results
were.  So anyone else have hypothyroidism?  I would be very
interested to know.
>
> Lastly, has anyone here tried  Alertec/Provigil?  I am always
tired and was wondering if anyone has found this to be helpful.
>
> Talk to you all again soon.
> --Zanni
>
> PS- I'll probably be more active if this stuff is coming directly
to my mailbox.
> --
> ___________________________________________________________
> Sign-up for Ads Free at Mail.com
> http://promo.mail.com/adsfreejump.htm

hello everyone!

although i didn't really get what happend to the "original" newsboard,
i'm glad to see our forum online again.

i hope all the knowledge, feelings and support that we collected over
the years didn't go down to rest at the electronical cemetary..

greetings,

christoph

Zanni here.  I know I have not been around for a long time, but I was just
thinking about you all today and then I got the notice of this group.  I'm in
grad school now and that takes up much of my time.  I am giving a presentation
for my class about the genetics of FSH.  I also went to a talk last week given
by a respiratory researcher who studies MD in animal models.  She had some
interesting things to say about some of the effects of MD on other things
besides just muscle.  She is going to send me some her research, so I'll let you
know what I find out.

One thing I thought was interesting was that in her animal models, individuals
with MD also had lowered levels of T3 thyroid hormone.  Quite a few years ago I
was diagnosed with hypothyroidism.  I am going to check with my doctor to see
what for sure the lab results were.  So anyone else have hypothyroidism?  I
would be very interested to know.

Lastly, has anyone here tried  Alertec/Provigil?  I am always tired and was
wondering if anyone has found this to be helpful.

Talk to you all again soon.
--Zanni

PS- I'll probably be more active if this stuff is coming directly to my mailbox.
--
___________________________________________________________
Sign-up for Ads Free at Mail.com
http://promo.mail.com/adsfreejump.htm

hi everyone!

glad to see the fsh society up and at it again.

hope everyone gets here soon!

have a good one!

linda :)

Welcome to the Facioscapulohumeral muscular dystrophy (FSH) Society,
Inc. Board and Chat.

We are back and invite you to join us.

Carol Perez, Executive Director
FSH Society, Inc.

I'm back, it's good to see this board back up.

Jim

Well I guess I can't read 'em if there aren't any can I.  When I first
looked at this site it said there were 2 msgs but when I looked
again at the top of the page it said there were none
Ann

oops sorry that should have read Ann not Helena, obviously need more
practice.
Karen

Hi Everyone
Its just like the first day back at school after the summer hols
trying to find your way round and hoping to meet up with all your
friends.
I've found Helena's message but I couldn't find the previous two
either, perhaps everyone should post a message to say they are back
so normal service can be resumed, I've really missed everyone's
postings.
Regards
Karen

Hi everybody.  It's so nice to have a board again.  I am unable to
access the msgs that are posted.  It says 2 posted but where are
they?
  Guess it'll take a bit of getting used to.
Ann