Comment

Comment by Jana on February 27, 2012 at 2:19pm

To follow on SilkHead's questions, if others have some too, please post and we can compile for further discussion with CANAAF.

Comment by Jana on February 27, 2012 at 2:17pm

You have raised some critical points Connie . . .

I would hope that CANAAF is linking with NAAF and other groups such as Be Bold and the Australians, to see what they are doing and/or have done. Not reinventing the wheel is pretty critical when you are working with volunteers. Tanya and/or I can raise such points with them. And as SilkHead notes, there are a lot of existing resources, even beyond the core national groups.

We meet with Enzina from the local NAAF chapter not so long ago, to begin to discuss the relationship between the two groups. What came up at that time was that NAAF groups have to have a doctor present at their meetings (this will be critical to clarify with CANAAF, as our focus with this AW group has been different). So we saw the NAAF group almost as an intake point. Enzina also goes to schools and takes individual contacts, from people who want more direct communication. We offered to help with both.

Enzina was also invited to the CANAAF skype, but I am not sure if she attended. Tanya can clarify this. And we should also touch base with her as a follow up.

Again, the thing I like the most about a manual - for individuals or groups - is not having to start at ground zero. It also becomes a critical point of connection, and with the internet and social media, that now allows for global possibilities!

Comment by SilkHead on February 27, 2012 at 2:10pm

I think a manual is a great thing. Although from my search online, there is alot of resources out there for support on the internet. As btflbaldgrrl has been posting, there is much more media around Alopecia then even 5 to 10 years ago. That being said, I don't think they have to go over board with a support manual, just a resource to point people in the right direction of "What to do now?" in their alopecia recovery journey.
So with this CANAAF conversation did they mention any necessary changes you have to make to your group to fall under the CANAAF umbrella so to speak?
What are is the capacity we have to use the CANAAF name in group things we do like btfbaldgrrls suggestion of raising awareness with the Beach Walk. Or fundraising so we have some funds to better carry the message of Vancouver CANAAF to those who need it like schools, cards at doctors offices, etc.
Does CANAAF go to schools and talk to kids about alopecia?
These are some of the things I would like to know....

Comment by Connie B on February 27, 2012 at 12:42pm

I want to echo the earlier comments about the availability of resources - developing a manual is no small task.

I'm fairly new to all of this, so I could benefit from a bit of background information. What's the role of the national CANAFF organization vs. what would be provided locally as CANAFF Vancouver vs what is provided by Vancouver NAAF? I'm not sure I understand the distinction well enough to provide any meaningful comments or suggestions...and would caution on potential duplication of role/function with Vancouver NAAF.

Comment by Jana on February 27, 2012 at 12:26am

@Tanya . . . Well maybe I was reading that in a way that demonstrated what I thought was most important. Lol. In rereading, I see what you meant - for individuals. Well perhaps if one adheres to the hypothesis that alopecia is an extremely isolating disease, than a manual for individuals might be a good thing. It might provide enough of a base that more people reach out to the alopecia community for further support. Will be interesting to see the end result!

I will see what more I can find out on the affiliation front, and report back on here.

Cheers all!

Comment by Tanya on February 26, 2012 at 9:02pm

@btflbaldgrrl Reading your post brought up a good point - I never asked if it's a support manual for support groups or for the newly diagnosed! I assumed it's the latter! We didn't dive into the manual details, but it's something they haven't begun work on. I should think they would welcome help :)

I didn't ask this time if a doctor needs to be present (have asked before and Allison said she doesn't think so - but if you can confirm with her that would be great). I'm quite certain they are very flexible in that regard. Enforcing a doctor's presence defeats the purpose of this group. One can just go to the NAAF group if they miss Dr. Shapiro. haha ;)

Comment by Jana on February 26, 2012 at 6:42pm

Might just be an chicken and egg thing. : ) Giving support can be quite ominous in some ways, and so having some basic information from which to work would be a good thing, I would think. That way the energy invested in coming up with support ideas, can be redirected to those who need the support. And having a manual might encourage some other cities to organize themselves, where it might have felt too daunting before. Did they say if they have sources, and also if they want some help? Just thinking of our numerous discussions.

Tanya, are we able to affiliate and continue to meet without a docgtor? I know the Toronto support groups all meet with a doctor present. And maybe you can tell us a bit more about what this will mean for our working relationship with the local NAAF group.

Thanks so much for representing us this morning! : )

Comment by Tanya on February 26, 2012 at 2:09pm

Hi All! I just had a Skype video chat with CANAAF (Jim, Julie, and Allison)! The sound was choppy on my end, so it was a short chat, but so great to see everyone face to face :)

CANAAF will be working to set us up as CANAAF Vancouver. The web updates will also be speedier in the near future and support for each province will be listed on their website.

CANAAF's most immediate goal is putting together a support manual for alopecians. I would argue that it is not as important to have a "manual" but more important to have a way to point new alopecians to supporting people (e.g. a group, or a couple people to talk to over the phone). Then again a manual is consistent and complete. What do you guys think?

Comment by Jana on February 25, 2012 at 12:35pm

That you did Sandra! : )

Comment by Sandra Fournier on February 25, 2012 at 11:32am

Thank-you so much Tanya, Elenore and Btflbaldgrrl for the warm welcome. You are truly an amazing and inspiring group of ladies. I'm happy to have three new friends in Vancouver.

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