Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> News >> Rare Disease Day, Feb 28th, please read and see Masto VIDEO http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1298293998 Message started by Riverwn on 02/21/11 at 01:13:18

Title: Rare Disease Day, Feb 28th, please read and see Masto VIDEO
Post by Riverwn on 02/21/11 at 01:13:18

Rare Disease Day is Feb 28th ONE week away! This is extremely important for us. Not every state recognizes it--check your state. This is NORDS anniversary and most rare disease orgs are gathering online at youtube, see beloww;

"National Organization for Rare Disorders, Inc. (NORD) Show Your Strength. Share Your Story. Use a camera, phone, web cam or other video device and then submit it here http://bit.ly/h6GyoO and Alnylam will donate $10 for every video submitted to help support educational programs for all rare disease"

L Sterling at TMS did a wonderful video, already up on youtube. I highly recommend it. PLEASE take a look. Other rare diseases ill be promoting their cause too, lets make sure mast cell patients and families are not forgotton.

See that video here http://www.youtube.com/watch?v=8PXIrBkEO34

Title: Re: Rare Disease Day, Feb 28th, please read and see Masto VIDEO
Post by In2butterflyz on 02/21/11 at 15:16:55

Thanks for sharing this video Ramona! [smiley=thumbsup.gif]

By the way I am happy that you are feeling good enough to get back on here and post again! ;)

Take Care,
Tracey

Title: Re: Rare Disease Day, Feb 28th, please read and see Masto VIDEO
Post by DeborahW, Founder on 02/22/11 at 00:55:31

Good video, but sad that it excludes all of us who have mast cell disease, but not masto. For example, I can't put that on my facebook wall, because everyone will think I have a disease, masto, which I do not. It's too bad that it excluded so many of us.

Title: Re: Rare Disease Day, Feb 28th, please read and see Masto VIDEO
Post by In2butterflyz on 02/22/11 at 04:18:51

I totally agree with you Deb, as a shocker I did feel a bit excluded. >:(

Maybe the TMS needs to hear some constructive criticism about their video!

Take Care,
Tracey

Title: Re: Rare Disease Day, Feb 28th, please read and see Masto VIDEO
Post by kenna on 04/25/11 at 05:33:05

I partly agree with you, Deborah & Tracy. But a bigger part does not. Our complex illness with all of its various symptoms & manifestations is defined by an enormous amount of information. If each version of this disease was put into one video would make for a lengthy video with far too much information for rookies to make sense of.
I commend the author [smiley=tongue.gif]for capturing and conveying what they are likely most familiar with.
It would be fabulous if there were several versions to match up with each of our types. Or even a template to go by to make our personal version with maybe an opening statement that covers all then states the types then leaves the rest for us to fill in.
I don't know. I'm just glad to see a great format for offering the info to those around us who need more understanding and plan to use this as a template for myself & possibly others with "my" type...
So there :P... (I just wanted to use the smiley sticking out his tongue for something. I really meant have a fantastically great and productive good feelin' day all!)