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Macv"For me, MDjunction has been a place where I can share my experiences
living with the very rare bone disease called Ollier's ( Enchondromatosis ) with the parents of children recently diagnosed. I can help them not to run
into the pitfalls my parents did when I was young, give them a bit of a view
from their child's perspective and simply be there to offer support and
hope to people who are scared and just had their lives upended. I also belong to a chronic pain group and it's been a Godsend to be able to actually
talk with others who understand what I'm dealing with. Besides them helping me through my tough times, I can be there to help them as well. Here too, I can use my years of experience to help others avoid pitfalls and it makes me feel good, gives my life more purpose. MDjunction brings people
together when their suffering, at their darkest and feeling alone in this world and allows some light to be brought back into their lives. HOPE, that's what
MDjunction means to me!
Linda aka Macv
" (Macv)

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Lupus ForumsGeneral & SupportPortland Walk for Lupus Now
08/08/2012 07:47 AM
Brield
 
Posts: 4
New Member

Hi everyone!

My family lost our Aunt to Lupus on September 22, 2010. Ever since I can remember I've been trying to raise awareness for this disease. I've been fortunate enough to be a part of the planning committee for the Portland Walk for Lupus Now event put on by the Lupus Foundation of America!! We would love to see all of you there!!

It will be September 15th at Oaks Park in Portland.

Registration is $25 but if you are a member of the LFA, you can register for free!!

You will get a t-shirt as well Smile

As some of you might know, the LFA hasn't had a walk in Portland for a couple years so we're bringing it back!! Spread the word, get your families involved, and meet some others that struggle with this disease!

Here is the link to register:

http://lupuspnw.kintera.org/faf/home/default.asp? ievent=1029286

Hope you can make it Smile

Brianna

Reply

08/08/2012 11:26 AM  Top
mumeva
mumeva
 
Posts: 5490
Group Leader
I'm an Advocate

Brianna....Welcome to this fantastic support site. I am very sorry to hear of the passing of your aunt to this terrible disease. So wonderful to hear that they are doing a walk for Lupus in Portland.....I should let my cousin know as he lives in Portland and my niece lives in Vancouver, Washington so will have to let her know. Were having a walk a thon in San Francisco in September....not sure if I will be able to attend that. I wish you all the best.

Eva

I long to dwell in your tent forever and take refuge under the shelter of your wings: Psalms 61:4

08/08/2012 06:01 PM  Top
Brield
 
Posts: 4
New Member

Hi Eva!

Thanks for the reply Smile I'm so glad I found this site! It would be awesome if your family came! Best wishes to you Smile

Brianna


08/08/2012 06:03 PM  Top
amandarose
amandarose
 
Posts: 126
Member

So sorry for your loss, But im sure your aunt wiould be proud of you for doing this and rememebring her as you do I will send a little donations your this eveing. I also am doing the walk here in San Francisco Sept 22. i have makde a team and we are doing great we have rasied $295 already. i hope the best of luck to you and your team!!

here is my link for my walk as well if you can pass it on! thanks

http://walk.lupusresearch.org/site/TR/WalkwithUs/ Walk2010JasperRedesign?px=2089935&pg=personal&fr_id=3020


Previous discussions I participated in:
Hello....
The Sun
Im Getting Closer

08/08/2012 08:49 PM  Top
redhairali
redhairali
 
Posts: 3393
Group Leader

Hi and welcome to the grouo. As you can see we have some pretty special members here. I hope you visit s lot.

Alison


08/09/2012 12:44 AM  Top
hawakeita
hawakeita
 
Posts: 1682
Group Leader
I'm an Advocate

Portland Maine? Portland Oregon? Just trying to figure out which friend to tell it about. Smile
MK

08/09/2012 02:19 AM  Top
Brield
 
Posts: 4
New Member

Portland, Oregon Smile I didn't really realize this was a national forum until after I already posted, oops! Lol Thanks for telling your friends!!

08/09/2012 04:44 PM  Top
hawakeita
hawakeita
 
Posts: 1682
Group Leader
I'm an Advocate

National, girl, we are international! The website is based out of Israel, and I've met folks from Australia, Africa and beyond. Smile
MK

08/09/2012 05:59 PM  Top
redhairali
redhairali
 
Posts: 3393
Group Leader

I didn't know this site was out of Isreal.

08/09/2012 06:03 PM  Top
Brield
 
Posts: 4
New Member

Wow!! That's awesome!
Reply

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