# Bens Friends **URL:** https://forum.livingwitheagle.org/c/bens-friends/11.md?page=2 [Latest](https://forum.livingwitheagle.org/latest.md) · [Categories](https://forum.livingwitheagle.org/categories.md) · [Tags](https://forum.livingwitheagle.org/tags.md) **Page:** 3 --- ## [We are in the middle of Glacier Park](https://forum.livingwitheagle.org/t/we-are-in-the-middle-of-glacier-park/5622)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [August 7, 2019, 8:24pm UTC](https://forum.livingwitheagle.org/t/we-are-in-the-middle-of-glacier-park/5622 "2019-08-07T20:24:00Z")
Tomorrow we “Float” Please Share on more time… https://www.gofundme.com/help-support-rare-disease-communities --- ## [Ben's Friends Foot and Float](https://forum.livingwitheagle.org/t/bens-friends-foot-and-float/5571)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [July 31, 2019, 7:30pm UTC](https://forum.livingwitheagle.org/t/bens-friends-foot-and-float/5571 "2019-07-31T19:30:46Z")
Your Ben’s Friends Team (Ben, TJ, Seenie, relatives and friends) are heading out to Glacier National Park to fundraise and prove what we all know: Rare disease patients can and do! Ben’s Friends gives the emotional and… --- ## [Weekly “Spot” for July 10, 2019](https://forum.livingwitheagle.org/t/weekly-spot-for-july-10-2019/5464)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [July 10, 2019, 3:54pm UTC](https://forum.livingwitheagle.org/t/weekly-spot-for-july-10-2019/5464 "2019-07-10T15:54:26Z")
Announcements: Your Ben’s Friends team (including TJ and Seenie) will be hosting a casual get together by the pool for members on the evening of Wednesday, July 24th. We’ll be staying near San Francisco Airport (Burling… --- ## [Simple pleasures can go a long way to increasing well-being](https://forum.livingwitheagle.org/t/simple-pleasures-can-go-a-long-way-to-increasing-well-being/5399)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 25, 2019, 10:00pm UTC](https://forum.livingwitheagle.org/t/simple-pleasures-can-go-a-long-way-to-increasing-well-being/5399 "2019-06-25T22:00:51Z")
image.png1454×424 93.7 KB News and articles of interest to over 70,000 members of Ben’s Friends communities all over the world. Simple pleasures can go a long way to increasing well-being. If your doctor told you … --- ## [SPOT: our mistake](https://forum.livingwitheagle.org/t/spot-our-mistake/5375)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 20, 2019, 2:51pm UTC](https://forum.livingwitheagle.org/t/spot-our-mistake/5375 "2019-06-20T14:51:04Z")
Yesterday we put a call out for parents of children who have Hereditary Angioedema, telling them about the opportunity to participate in some market research. What we forgot to tell you is how to put your name in as a … --- ## [Spot: Got Angioedema? Know about our Foot & Float?](https://forum.livingwitheagle.org/t/spot-got-angioedema-know-about-our-foot-float/5366)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 19, 2019, 5:33pm UTC](https://forum.livingwitheagle.org/t/spot-got-angioedema-know-about-our-foot-float/5366 "2019-06-19T17:33:46Z")
Opinion Health Market is a research agency based in London, UK. They work closely with several pharmaceutical companies helping them out to gather better knowledge and understanding of different treatment options for a… --- ## [Being gentle on ourselves](https://forum.livingwitheagle.org/t/being-gentle-on-ourselves/5339)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 14, 2019, 4:19pm UTC](https://forum.livingwitheagle.org/t/being-gentle-on-ourselves/5339 "2019-06-14T16:19:12Z")
Hello – azurelle here, your new article editor. The other day I happened upon an article written by Kelly C, someone who has chronic migraines much like myself and thought her message applied to just about everyone, not … --- ## [Virtual Reality as Pain Therapy](https://forum.livingwitheagle.org/t/virtual-reality-as-pain-therapy/5296)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 7, 2019, 2:52pm UTC](https://forum.livingwitheagle.org/t/virtual-reality-as-pain-therapy/5296 "2019-06-07T14:52:24Z")
According to a New York Times article last month, virtual reality is being used as therapy for pain. Virtual reality is more than a distraction, researchers say. It’s more like a brain hack that occupies the brain so ful… --- ## [Foot and Float to Build 10 New Communities](https://forum.livingwitheagle.org/t/foot-and-float-to-build-10-new-communities/5270)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 29, 2019, 3:32pm UTC](https://forum.livingwitheagle.org/t/foot-and-float-to-build-10-new-communities/5270 "2019-05-29T15:32:55Z")
Ten Ben’s Friends Members and Friends are traveling to Glacier National Park This August for five active days to prove rare Disease Can’t stop - us not on Land or on Water and to raise money to build ten new Ben’s Friend… --- ## [It’s Okay To Not Be Okay](https://forum.livingwitheagle.org/t/it-s-okay-to-not-be-okay/5250)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 21, 2019, 10:56pm UTC](https://forum.livingwitheagle.org/t/it-s-okay-to-not-be-okay/5250 "2019-05-21T22:56:55Z")
It’s okay to not have the perfect life, believe it or not, social media aside, no one has a life of perfection. It’s okay to not be okay and admit it. It’s okay to struggle and to be open with those who are close to you… --- ## [What Makes Speciality Drugs so Special?](https://forum.livingwitheagle.org/t/what-makes-speciality-drugs-so-special/5233)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 17, 2019, 5:30pm UTC](https://forum.livingwitheagle.org/t/what-makes-speciality-drugs-so-special/5233 "2019-05-17T17:30:31Z")
Ben’s Friends recently attended the World Orphan Drug Conference. Not only did we meet many wonderful people, but we learned a great deal as well. This article offers more information about orphan drugs in general. Most… --- ## [Chronic illness and friendship](https://forum.livingwitheagle.org/t/chronic-illness-and-friendship/5184)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 8, 2019, 10:25pm UTC](https://forum.livingwitheagle.org/t/chronic-illness-and-friendship/5184 "2019-05-08T22:25:01Z")
Is it possible to have friends as a person with chronic illness? This may seem like a silly question, because obviously the answer is yes, but I know that as a person with chronic illness, friendships can be tricky to n… --- ## [April 27 News item](https://forum.livingwitheagle.org/t/april-27-news-item/5126)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 1\ **Last updated:** [April 28, 2019, 7:28am UTC](https://forum.livingwitheagle.org/t/april-27-news-item/5126 "2019-04-28T07:28:04Z")
“Ben’s Friends” I Say And I get a blank look. You know the one, right? Despite the fact that we have 74,000 members in more than 40 communities, outside of our “butterfly circle,” few people know what I’m talking about… --- ## [This Week's News](https://forum.livingwitheagle.org/t/this-weeks-news/5075)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [April 18, 2019, 9:09pm UTC](https://forum.livingwitheagle.org/t/this-weeks-news/5075 "2019-04-18T21:09:08Z")
Having a Rare Disease or Condition Changes Everything. All the time. Much sooner than expected, I found myself too tired to continue my life as I planned it. My original doctor didn’t think there was much wrong with me.… --- ## [A Good Day of Struggle](https://forum.livingwitheagle.org/t/a-good-day-of-struggle/5004)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [April 6, 2019, 2:11pm UTC](https://forum.livingwitheagle.org/t/a-good-day-of-struggle/5004 "2019-04-06T14:11:20Z")
Will you be near Washington DC on Friday April 12th? Ben’s Friends is having a Meet 'n Greet. The Ben’s Friends team will be in the National Harbor area (Oxon Hills) on April 12th. Would you like to join us at The Flami… --- ## [Upcoming Events](https://forum.livingwitheagle.org/t/upcoming-events/4961)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 31, 2019, 7:35pm UTC](https://forum.livingwitheagle.org/t/upcoming-events/4961 "2019-03-31T19:35:46Z")
Will you be near Washington DC on Friday April 12th? Ben’s Friends is having a Meet 'n Greet. The Ben’s Friends team will be in the National Harbor area (Oxon Hills) on April 12th. Would you like to join us at The Flami… --- ## [Properly Addressing Chronic Illness](https://forum.livingwitheagle.org/t/properly-addressing-chronic-illness/4832)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 18, 2019, 8:27pm UTC](https://forum.livingwitheagle.org/t/properly-addressing-chronic-illness/4832 "2019-03-18T20:27:11Z")
You’re invited to Ben’s Friendly Get Together! Will you be near Washington, DC on Friday evening, April 12th? Well then, you’re invited to join Ben (our founder) and Friends for a casual get together. Location will be s… --- ## [Whoopsie-Daisy!](https://forum.livingwitheagle.org/t/whoopsie-daisy/4791)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 10, 2019, 7:16pm UTC](https://forum.livingwitheagle.org/t/whoopsie-daisy/4791 "2019-03-10T19:16:51Z")
Whoopsie-Daisy! As we’re sure you noticed, an article “Help, I Need Somebody…” went out to the communities a few weeks ago. Although it was very well received, it did accidentally generate an abundance of email for some… --- ## [Meeting in Cardiff South Wales this Thursday](https://forum.livingwitheagle.org/t/meeting-in-cardiff-south-wales-this-thursday/4729)
**Author:** [@cjeagle](https://forum.livingwitheagle.org/u/cjeagle)\ **Replies:** 3\ **Last updated:** [March 3, 2019, 9:51pm UTC](https://forum.livingwitheagle.org/t/meeting-in-cardiff-south-wales-this-thursday/4729 "2019-03-03T21:51:26Z")
A few of us ES sufferers are meeting in Cardiff this Thursday 7th March 2019. If you would like to join us please let me know!!! --- ## [Help, I Need Somebody, Not Just Anybody](https://forum.livingwitheagle.org/t/help-i-need-somebody-not-just-anybody/4675)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [February 23, 2019, 4:00pm UTC](https://forum.livingwitheagle.org/t/help-i-need-somebody-not-just-anybody/4675 "2019-02-23T16:00:53Z")
From: Merl on TBI Having a rare disease or condition can take over your life. It can also limit your entire outlook to the point that you lose all perspective. That is, if we allow it. In my former life I was a living … --- ## [Support: give as good as you get!](https://forum.livingwitheagle.org/t/support-give-as-good-as-you-get/4620)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [February 7, 2019, 7:39pm UTC](https://forum.livingwitheagle.org/t/support-give-as-good-as-you-get/4620 "2019-02-07T19:39:34Z")
Here at Ben’s Friends, we live by “To get support, give support!”. When you’ve got a rare disease or chronic condition, life can be tough, as if it’s not tough enough already! We know: most of us here have at least one o… --- ## [Bens Friends 2018 Report](https://forum.livingwitheagle.org/t/bens-friends-2018-report/4594)
**Author:** [@Bens\_Friends](https://forum.livingwitheagle.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [February 1, 2019, 8:05pm UTC](https://forum.livingwitheagle.org/t/bens-friends-2018-report/4594 "2019-02-01T20:05:22Z")
The following New communities were started in 2018, many of which represent co-conditions that occur with Rare Diseases already supported by Ben’s Friends Patient communities and may be of interest to our existing mem… --- ## [Doctors for ES in UT?](https://forum.livingwitheagle.org/t/doctors-for-es-in-ut/3114)
**Author:** [@jess1129](https://forum.livingwitheagle.org/u/jess1129)\ **Replies:** 11\ **Last updated:** [May 10, 2018, 8:08pm UTC](https://forum.livingwitheagle.org/t/doctors-for-es-in-ut/3114 "2018-05-10T20:08:09Z")
Does anyone know if there are doctors in Utah that can help with ES? I feel like I’m getting the run around and the pain is so severe that it scares me. I just worry that this thing will kill me if I don’t find a doctor … --- ## [Bens friends Pay Pal Link](https://forum.livingwitheagle.org/t/bens-friends-pay-pal-link/1211)
**Author:** [@Mod\_support](https://forum.livingwitheagle.org/u/Mod_support)\ **Replies:** 0\ **Last updated:** [April 29, 2016, 6:45pm UTC](https://forum.livingwitheagle.org/t/bens-friends-pay-pal-link/1211 "2016-04-29T18:45:21Z")
Ben’s Friends operates with very low overhead, allowing us to keep our focus on patients and caregivers and providing them the information and support they need to navigate their disease or condition. Every donation matt… --- ## [Happy New Years - New Communities from Bens Friends](https://forum.livingwitheagle.org/t/happy-new-years-new-communities-from-bens-friends/2912)
**Author:** [@Mod\_support](https://forum.livingwitheagle.org/u/Mod_support)\ **Replies:** 0\ **Last updated:** [December 28, 2017, 5:17pm UTC](https://forum.livingwitheagle.org/t/happy-new-years-new-communities-from-bens-friends/2912 "2017-12-28T17:17:57Z")
Your Team has been HARD at work and through the support of our generous donors we are able to bring some new communities on line. Our hope is through 2018 we will be able to bring on at least 2 new communities per month … --- ## [A Message From Ben](https://forum.livingwitheagle.org/t/a-message-from-ben/2887)
**Author:** [@Mod\_support](https://forum.livingwitheagle.org/u/Mod_support)\ **Replies:** 0\ **Last updated:** [December 21, 2017, 5:24pm UTC](https://forum.livingwitheagle.org/t/a-message-from-ben/2887 "2017-12-21T17:24:46Z")
As a 501c3 nonprofit, we depend on our generous donors to pay the bills. They donate because they want to make a difference in people’s lives. If your community has made a difference in your life, our donors would love … --- ## [Searching for surgeon asap in the Salt Lake City or Denver areas. My local ENT only does intramural surgery and due to severe TMJ limiting mouth opening, I need the extraoral surgery. My pain level is off the charts. Anyone.....help?](https://forum.livingwitheagle.org/t/searching-for-surgeon-asap-in-the-salt-lake-city-or-denver-areas-my-local-ent-only-does-intramural-surgery-and-due-to-severe-tmj-limiting-mouth-opening-i-need-the-extraoral-surgery-my-pain-level-is-off-the-charts-anyone-help/2107)
**Author:** [@Gina45](https://forum.livingwitheagle.org/u/Gina45)\ **Replies:** 4\ **Last updated:** [May 7, 2017, 4:14am UTC](https://forum.livingwitheagle.org/t/searching-for-surgeon-asap-in-the-salt-lake-city-or-denver-areas-my-local-ent-only-does-intramural-surgery-and-due-to-severe-tmj-limiting-mouth-opening-i-need-the-extraoral-surgery-my-pain-level-is-off-the-charts-anyone-help/2107 "2017-05-07T04:14:05Z")
http://forum.livingwitheagle.org/t/searching-for-surgeon-in-cold-or-utah/2099 --- ## [More Questions, ES, TN, GN, CRPS, etc](https://forum.livingwitheagle.org/t/more-questions-es-tn-gn-crps-etc/2126)
**Author:** [@Patti2758](https://forum.livingwitheagle.org/u/Patti2758)\ **Replies:** 7\ **Last updated:** [May 5, 2017, 7:11am UTC](https://forum.livingwitheagle.org/t/more-questions-es-tn-gn-crps-etc/2126 "2017-05-05T07:11:42Z")
Jules, I think I should ask you how to send this out to everyone. I'm sorry to bother only you. I am four weeks post ES surgery extraorally on only the left side. Recovery is going slowly. I'm wondering if anyone has… --- ## [Ben's Friends Discourse Community Apps](https://forum.livingwitheagle.org/t/bens-friends-discourse-community-apps/1847)
**Author:** [@Mod\_support](https://forum.livingwitheagle.org/u/Mod_support)\ **Replies:** 0\ **Last updated:** [January 12, 2017, 11:34pm UTC](https://forum.livingwitheagle.org/t/bens-friends-discourse-community-apps/1847 "2017-01-12T23:34:28Z")
--- ## [Our Communities](https://forum.livingwitheagle.org/t/our-communities/1208)
**Author:** [@Mod\_support](https://forum.livingwitheagle.org/u/Mod_support)\ **Replies:** 0\ **Last updated:** [April 29, 2016, 6:24pm UTC](https://forum.livingwitheagle.org/t/our-communities/1208 "2016-04-29T18:24:09Z")
\[\] (http://www.livingwithfibro.org/) \