Rules of the Forum

Posted: August 19th 2008

Cristy Balcells

A heartfelt welcome to you! We sincerely hope that this forum gives you a voice and helps you to find a place in the mitochondrial disease community.

We expect this forum to be an interactive, dynamic area of MitoAction.org

Here are our guidelines that we ask you to respectfully follow:

1. Be respectful! Name calling, disrespectful comments, personal slander, gossip etc. is NOT tolerated.  We are all in this community together - please be nice.

2. Be honest. When participating in this forum, we encourage you to be honest about yourself as well as your perspectives and your experiences.  Again, if you do this while following rule number one, we can learn from one another rather than be offended.

3. Be active! Lurkers don't build communities.  Post, reply, start a new topic, share your frustrations as well as the lessons you've learned.  This is a grassroots effort, and we need your help!

4. Be focused. This forum is not a place to advertise, solicit for money, endorse for personal gain, etc.  We have so much to learn from one another - please stay focused on the misson!

 

Now go get started, and again, welcome!

 

 

__________________

Cristy Balcells RN MSN

Executive Director

 

Hi

Submitted by jujubug on Sun, 08/24/2008 - 7:07pm.

Hi everyone..... hugs jujubug 3 year old mitochondrial disease mitochondrial depletion cortical blindness optic atrophy encephlymyopathy thermal irregularity developmentally delayed non verbal cns global hypotonia seizures reflux constipation scoliosis g/j tube pulse ox o2 suction machine concentrator feeding pump wheelchair feeding chair bathe chair creepster crawler had a make a wish room makeover muscle biop's skin eegs mrs lumbar punctures sleep studies milk scan modified barium swallow erg vep totally positive I have forgotten something.... but this is juju in nutshell oH AND SHE IS SSSOOOOOOOOO CCCUUUUTTE

{{{{HUGS}}}} to you little

Submitted by dianelanglamort... on Mon, 08/25/2008 - 1:16pm.

{{{{HUGS}}}} to you little Ju Ju, and to your Mommy too!! Diane