Myositis - Online Support Group

We are patients affected by myositis, here for your support.


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Ben Munoz
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  • Austin, TX
  • United States
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  • Bernadette Faith Stancliff (Fay)

Ben Munoz's Groups

Ben Munoz's Discussions

How to Create Group and Organize A Meetup in Your City

Since others have subsequently asked about organizing groups and meetups in their area, the moderators and I have decided to create this forum discussion so the community can throw out ideas and…Continue

Started Dec 19, 2011

Trouble with the Send Button (or Other Buttons)

Apologies, this is a re-ocurring problem. I've found that if I scroll down on the page farther, creating 2 inches between the "Send" button and the bottom of the browser window, then it works. When…Continue

Started Aug 13, 2011

How To Make Our Community Easier to Find

A member of our sister site http://www.ChiariSupport.org posted a tutorial on how to make our community easier to find on the internet by linking to us from…Continue

Started Jun 28, 2011

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Moderator
Ben Munoz's blog post was featured

May 2012 MyositisSupport Community Newsletter

Dear Friends and Family of MyositisSupport,We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead! Here are some highlights:Total members for all communities at the end of April: 17,629. This is 924 higher than March, our…See More
yesterday

Moderator
Ben Munoz posted a blog post

May 2012 MyositisSupport Community Newsletter

Dear Friends and Family of MyositisSupport,We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead! Here are some highlights:Total members for all communities at the end of April: 17,629. This is 924 higher than March, our…See More
Saturday

Moderator
Ben Munoz left a comment for Susan Grainger
"Susan, welcome to the community.  Everyone is here for your support.  Please don't feel shy about asking anyone a question or saying hello to anyone here.   --Ben P.S. If you find the community helpful, please help spread the…"
May 13
Heather Brown left a comment for Ben Munoz
"Thanks Ben. I am still trying to get my head round things and feel my husband is luckier than most other people out there. I have read some of the stories & my heart goes out to everyone suffering this terrible illness. At present my husand…"
May 6

Moderator
Ben Munoz left a comment for Heather Brown
"Heather, welcome to the community.  We're all here to support you and your husband.  Please don't be shy about saying hello to anyone and asking anyone a question.  Everyone here is super friendly and helpful. --Ben"
May 5

Moderator
Ben Munoz posted blog posts
Apr 21
Profile IconMyositis - Online Support Group now has Member Map
Apr 7

Moderator
Ben Munoz posted a blog post

March 2012 Community Newsletter

Dear Friends and Family of MyositisSupport,February brought us great strides as our various communities of rare disease support groups gathered the largest number of new memberships of all time! The volume of blog posts, comments and discussions also increased. We at Ben’s Friends commend you all for your active support of our communities! IN THIS ISSUE -———————————————————————————————————1.  Welcome New Members2.  Featured…See More
Mar 23

Moderator
Ben Munoz posted a group
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Musical Dedications

Music to inspire ourselves.  Music to inspire others.  Music to dedicate to other members.See More
Mar 21

Moderator
Ben Munoz posted a blog post

February 2012 Community Newsletter

Dear Friends and Family of MyositisSupport,As you well know, living with myositis can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!Explore more how our community had helped members face the challenge of fighting rare, debilitating illnesses by weaving a web of…See More
Feb 22

Moderator
Ben Munoz posted a blog post

January 2012 Community Newsletter

MyositisSupport Members, Friends and Family,As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.We’re truly privileged to help you make 2012…See More
Jan 26

Moderator
Ben Munoz posted a blog post

December 2011 Community Newsletter

MyositisSupport Members, Friends and Family,We hope this message finds you well with high spirits and inner joy. We’re happy to inform you that our Myositis community continuously been growing. And as always, we’re here to give strength and support.-------------------------------------------------------------------------------- IN THIS ISSUE--------------------------------------------------------------------------------1.   Welcome New…See More
Dec 20, 2011

Moderator
Ben Munoz posted a discussion

How to Create Group and Organize A Meetup in Your City

Since others have subsequently asked about organizing groups and meetups in their area, the moderators and I have decided to create this forum discussion so the community can throw out ideas and dates for meetups in other cities around the world. Creating Groups:Create a group within the patient community. To make the group easier to be searched, don't forget to include your CITY or REGION name in the title of your group.…See More
Dec 19, 2011
Huda left a comment for Ben Munoz
"Thanks Ben. So nice of you :)"
Nov 22, 2011

Moderator
Ben Munoz left a comment for Reyne Johnson
"Hello and welcome.  We're all here for you, so please don't be shy about saying hello to anyone or asking us any question.  :)"
Nov 22, 2011

Moderator
Ben Munoz left a comment for Denise Hribar
"Advice on dealing with the emotions?  I would say post blogs or discussions here describing how you are feeling and how difficult it is.  Then ask the community about their experience.  You'll feel a lot better when you realize…"
Nov 20, 2011

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Please share your story with us...
In 2006, I suffered a stroke caused by an AVM, which is something like a brain aneurysm. I made it through the stroke but still had to deal with brain surgery, recovery, and waiting two years for the AVM to heal. I couldn't find the support I was looking for on the internet so I created http://www.avmsurvivors.org. The people I met there became like family to me.

My friend Scott suggested that there were probably other people who were in my shoes. People with rare medical conditions who would like to connect with others like them. That is how http://www.bensfriends.org and http://www.myositissupport.org began.

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Ben Munoz's Blog

May 2012 MyositisSupport Community Newsletter

Dear Friends and Family of MyositisSupport,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead!

 

Here are some highlights:

Total members for all communities at the…

Continue

Posted on May 26, 2012 at 7:00am

April 2012 Community Newsletter

Dear Friends and Family of MyositisSupport,

April – the smell of spring in the air!

Spring brings a lot of positive notes: it signals growth and rebirth. As Ben’s Friends, our patient support group is growing real fast. As a member community, you’ll see stats on how we contributed to this growth as reported below. Be assured that no matter how small the contribution may be, it adds up and it is very much appreciated!

Our presence is being felt…

Continue

Posted on April 21, 2012 at 10:00am

March 2012 Community Newsletter

Dear Friends and Family of MyositisSupport,

February brought us great strides as our various communities of rare disease support groups gathered the largest number of new memberships of all time! The volume of blog posts, comments and discussions also increased. We at Ben’s Friends commend you all for your active support of our communities!

 

IN THIS …

Continue

Posted on March 23, 2012 at 1:18am

February 2012 Community Newsletter

Dear Friends and Family of MyositisSupport,

As you well know, living with myositis can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!

Explore more how our community had helped members face the…

Continue

Posted on February 22, 2012 at 11:00pm

Comment Wall (16 comments)

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At 3:39am on May 6, 2012, Heather Brown said…

Thanks Ben. I am still trying to get my head round things and feel my husband is luckier than most other people out there. I have read some of the stories & my heart goes out to everyone suffering this terrible illness. At present my husand is not in the same position as so many other people. He is still coping with the frustration of trying to get people to understand how he is feeling. We are hoping it will not get any worse.

At 2:02pm on November 22, 2011, Huda said…

Thanks Ben. So nice of you :)

At 10:30pm on November 18, 2011, Donna Calkins said…

Thank you, I need the support. I feel like a fish out of water trying to help my child.

At 5:50pm on November 18, 2011, Denise Hribar said…

Hi and thank you.  I hope I can learn something about this disease, but more important, I hope I can learn how to deal with it emotionally.  Any advice?

At 8:07pm on May 17, 2011, Steve Morgan said…
Thank you, I'm sure looking forward to chatting with some folks like me.
At 11:48am on November 18, 2010, Maren Holzinger said…
Thank you for the note, Ben! I am so grateful for this community. I am hoping that I can find some strength in numbers here! I learned about the site from my friend Katie, who is marrying Greg Yeadon, a friend of yours from school? They are both wonderful people! Anyway, thank you so much for creating this amazing tool – we’re all out there, just need to find each other sometimes :-)
At 1:31pm on June 18, 2010, dee pope said…
Thank you, Ben, for the welcome! I hope to learn alot from the group about Myositis - a condition completely foreign to me until my diagnosis in December, 2009. I seem to be learning something new everyday but I have discovered that love and caring are very important. dee
At 5:30pm on May 5, 2010, T.Weikel said…
Hi Ben
Thanks for the warm welcome. I will share some of my" tricks" that have helped my husband, I put key rings on zippers ,back scratchers come in handy for opening drawers and a reacher /grabber is a must for anything that falls on the floor. I use some electrical wire that we had around the house and duct tapped it to utensils and it bends to make the utensils stay on the hand and not have to bend the hand to get into the dish. Suspenders clipped onto the pants and pull up the suspenders with the pants,because Jim has a problem bending down,this is good for the blankets/sheets on the bed also. I will post more ideas that hopefully can help our myositis people and their caregivers.
Take care .
Theresa Weikel
At 8:49am on April 12, 2010, Bernadette Faith Stancliff (Fay) said…
Hi Ben and thanks for the welcome! sorry I didn't respond until now but we are in the middle of packing to make a move to Dallas on the 25th.
Methotrexate nearly cost me my life but I suppose God had other plans! Or I am stubborn and wasn't ready to go! What form of Myositis do you have and how long have you battle it?
Fay
At 7:59am on April 12, 2010, Darlene Eschete said…
Your welcome Ben...Glad to be of some help anywhere possible. So great of you to start this site. I hope it helps all! Thanks again!
 
 
 

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Blog Posts

May 2012 MyositisSupport Community Newsletter

Dear Friends and Family of MyositisSupport,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient…

Continue

Posted by Ben Munoz on May 26, 2012 at 7:00am

OUR ONLINE PRESENCE IS GROWING!!!

OUR ONLINE PRESENCE IS GROWING!!!

Check out this link to view Ben's Friends FB-Twitter Milestone.…

Continue

Posted by Armando Abrero on May 22, 2012 at 7:06am

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