A new adventure.

[Vincent]

Late last spring I was told of an opportunity to help out ALS Canada by doing public speaking as an Ambassador. The Ambassador Program was started to provide speakers to deliver targeted talks to various groups. The idea being to have people who can speak from different perspectives on ALS from patient,to caregiver, clinicians, people who have lost someone to ALS, and researchers. It sounded like fun so I signed up. Somehow this has lead to me becoming the Patient Representative on the ALS Society of Canada Board of Directors. I have just spent the weekend at meetings with some of the brightest minds in research, money management, and medical people all focused on putting an end to ALS and providing services and equipment to people with ALS. A truely impressive group to be able to contribute to. So other than a sore butt from way too much sitting, a very productive weekend.
Vincent

 

[affected]

FANTASTIC!

How important it is to have actual PALS involved on this level.

I think many of us forget just how much incredible effort is being put into solving ALS because there is no cure yet. It isn't, IMHO, because of a lack of caring, it is one mother of a disease to figure out. But we have some of the best minds working on it all around the world. Wonderful that you have found a way to be a part of the effort!

 

[ShiftKicker]

Wow, Vincent- that's fantastic. Thank you so much for putting yourself out there.

 

[Nuts]

Vince, that's wonderful! Thank you for getting involved on such a level!
Becky

 

[JimInVA]

Most excellent!!

 

[scaredwifetx]

Thanks Vince for dedicating so much to the effort to fight this disease.

 

[Vincent]

I'd like to thank all of you for your encouragement. But really I'm there for purely mercenary reasons. I seem to be progressing slowly, so I thought I'd kill time fighting any way I can to beat this horrible disease.
Vincent

 

[Aussiemndcarer]

Vince, that is wonderful of you. We refer to this disease as " the beast" & we will try and do whatever it takes to beat it.
Live in hope is our motto. We live in country Western Australia ,a huge state, where distances are great. Even so, there needs to be awareness for treatment,fundraising,and even research. I imagine that Canada has the same challenges as Australia. Distance! It would be interesting to know if ALS Canada has a regional structure? Most states in Australia have a state organisation that is linked to a national group.Research findings are then shared. Some fundraising is also on a national level. This is then distributed to state groups. ALS / MND is only just beginning to get the exposure it deserves here in Australia. This has been helped by a sporting identity using his presence to spread the word on this disease. He is public speaking and encouraging other well known people to speak up as well. I have seen the amazing support this has generated here in Australia,so well done to you too. Keep spreading the word Vincent.

 

[affected]

Vince you chose the premium way to kill time

 

[fionae]

Dearest Vincent,

I have read so many of your posts, and they are always so meaningful.

I know you don't need to hear this from me,
But I am so proud of you, amd my heart is touched by you.
God Bless You always.
Profound Thanks,
Laura.

 

[chally]

Hey Vincent, way to go! Getting out there and doing something , anything, can slow the nightmare down. Thanks for being on the inside and letting us know what's up cause it's easy enough for anyone to get discouraged. Your the "BOMB". Love ya chally

 

[KimT]

God bless you for doing this, Vince. You're doing something that matters.