February-09 = pls awareness month

[Zaphoon]

The Spastic Paraplegia Foundation has this month listed as PLS Awareness Month on their website.

I don't see anything about this to celebrate about but I'm glad there has been a month set aside for awareness.

Zaphoon

 

[BethU]

I agree! Hopefully there will be some events planned to promote awareness among the public. Unfortunately, it's probably going to be up to patients to make it happen.

 

[Zaphoon]

I play in a community band and see at some point that this will have to come to an end when I can no longer handle my horn. The band director would be happy to do a concert dedicated to ALS/MND awareness (had to throw in MND to cover PLS). She's a sweetheart and would do so if asked.

Perhaps we can put something together this year and have the newspaper out to do a photoshoot to cover things. February doesn't have to be the only month for this sort of thing.

Zaphoon

P.S.
I'm thinking about changing my avatar. Any thoughts/recommendations (or who cares?)

 

[olly]

hi kim

i do know from a pls forum i was on there is alot of walks,fundraising and awareness there in the usa.
they also have a monthly news sheet/paper for pls'ers,you would have to contact a lady called linda(who has had pls for over 15yrs) or mark(has hsp) to be on there mailing list.
linda gives talks to neuro's and doc's about pls,knows more than they do.
mark runs the forum i think,may work for spf also.
you have great teams there,much more than we have.

 

[lovelily]

Hey Kim....don't be so quick to put that horn down. Hopefully you will have a very slow progression! I'm rootin for you!

And, by the way~I am fond of 'gumby and pokey'

 

[Zaphoon]

Caroline,

Would you happen to have the web address to the PLS forum you mentioned?

Lovelily,

Gumby and Pokey are in the barn and ready to return only by popular demand.

As for the horn, I'm hoping to keep playing for as long as possible but the moment I start to sound bad, I'll quit for the good of the band (about a 45-50 piece group).

Kim

P.S.
So, lovelily, you're not really for the magician as the Zaphoon avatar?

 

[trying to stay positive]

Hey, Z, I definitely want Gumby and Pokey back! Seeing them always brings at least a little smile to my face!

 

[lovelily]

Kim~Naa, the magician doesn't do anything for me. ;-) Gumby and pokey are my favorite...unless you could pull 'Davie and Goliath' out of the rabbits hat! Now 'they' were a good team.

 

[Zaphoon]

Gumby and Pokey have returned and the magician is back in the box. Thanks for letting me know you prefer Gumby and friends.

 

[Al]

Glow in the dark Gumby too. Don't recall him being that bright b4.

AL.