NF Foundation of Malaysia

[yvonnefoong]

Hi friends,

My friend, Keisha, and myself are setting up a non-profit organisation for NF patients in our country, Malaysia.

It will be the first ever organisation for NF in our country. We're doing this informally to spread NF awareness among Malaysians and to provide financial assistance and moral support to Malaysians with NF.

We plan to register this organisation when we are more established. Since we're new, we're wondering if the NNFF would offer us some advice on how to go about setting up an NGO.

I've been in this board for 2 years now. Tho' not very active but I hope that everyone will support our effortt in the name of NF.

Godspeed!

[tpeterson]

Have you contacted www.nf2crew.org. they are a group of peoplw with NF2 that are like a family. They may be abel to give you some ideas and support.
tom Peterson

[Ghostwriter4]

Mimi,
Hi, this is Michael. I saw your post and even
though we're worlds apart, geographically speaking, our hearts and what we're trying to
accomplish aren't. Once I return to graduate school likely in the fall, I will be reconnecting
with my previously established contaccts regarding
the NF support group I received approval to start
there. I recently received an e-mail from Jayme
Love, the Development Assistant for the California
NF chapter. Ironically, I have never met her in
person but her picture is now on the first page
of this site for the Hollywood Squares TV show
fundraiser. Perhaps, someday we will be too!
Not on the show but on this site for our ongoing
efforts! <img border="0" title="" alt="[Razz]" src="tongue.gif" />

Anyway, I find it hard to believe that she wouldn't point you in the right direction to take
advantage of the many resources and support at the
NNFF. I'm excited about what we are both doing
and my group is officially by them, too though it
hasn't begun yet. Lastly, I've been here for almost 2 years myself and visit often so as a fellow NF 2 family memeber I urge you to visit
more, you won't regret it! Jayme's e-mail is
NFCAL@aol.com You can tell her Michael Gergley
from the approved San Diego NF support group sent
you. Good luck and keep us posted and please
visit more, you like I won't regret it!

As always be blessed
Michael <img border="0" title="" alt="[Big Grin]" src="biggrin.gif" /> <img border="0" title="" alt="[Big Grin]" src="biggrin.gif" /> <img border="0" title="" alt="[Big Grin]" src="biggrin.gif" />

"For where your treasure is, there will your heart be also."-Matthew 6:21

[yvonnefoong]

Thank Michael for the kind info. We're already purchasing a domain name and webspace and soon have our website up. It's called the NFFM in short.

I've sent an email to nnff before but I didn't get a reply. Maybe the title didn't sound interesting. lol!

I'll email Jayme now.
Thanks again.

[yvonnefoong]

Michae, Jayme has not replied my mail until now. Anyway, we bought a domain located at http://www.nffm.org but there's nothing up yet. We've a buletin board tho'. Since we are yet to find any other NF patients in Malaysia besides myself and Keisha, I hope that u guys culd help me keep the board active.

Thanks.

[thebellsfive]

What does (FM)in NFFM stand for? I am going on Friday or Monday to set up a web site for us and trying to come up with a name also. We live in Northern California.

Great Job! I was thinking this morning how coming up with a name is hard, but then the thought came that is the easy part compared to setting up the web site. What are you planning on putting on the web site?

Good Luck Ü The fun is just beginning

<small>[ March 11, 2004, 06:36 PM: Message edited by: thebellsfive ]</small>

[yvonnefoong]

Good luck TheBellsfive on your project. NFFM stans for Neurofibromatosis Foundation of Malaysia(NFFM) see? :-)

I was thinking of asking the NNFF permission for using their NF infos on my site but they never ever replied any mails. I wonder how I go about this. They've some great brain scans and info I want to use. hmmm..

I also wonder... is NNFF a government body? cuz on the main site, they appeal for donations and all for research. But researches are done by the government and its very costly. And I doubt the NNFF ever gets enough fund for research. If this is so, then why do they appeal? hmmm...

[yvonnefoong]

hi friends. the NFFM now has a website at http://www.nffm.org. There's also a buletin board there.