# Bens Friends **URL:** https://forum.livingwithpsc.org/c/bens-friends/22.md?page=1 [Latest](https://forum.livingwithpsc.org/latest.md) · [Categories](https://forum.livingwithpsc.org/categories.md) **Page:** 2 --- ## [Give Back while you Stay Home!](https://forum.livingwithpsc.org/t/give-back-while-you-stay-home/3792)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [April 21, 2020, 8:04pm UTC](https://forum.livingwithpsc.org/t/give-back-while-you-stay-home/3792 "2020-04-21T20:04:39Z")
Many of us are staying home these days, and wishing we could be out there in the community, making a difference. There is a way to do that! Why not consider supporting the people in your Ben’s Friends community by beco… --- ## [COVID 19 Current Research - The real scoop](https://forum.livingwithpsc.org/t/covid-19-current-research-the-real-scoop/3726)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 18, 2020, 4:29pm UTC](https://forum.livingwithpsc.org/t/covid-19-current-research-the-real-scoop/3726 "2020-03-18T16:29:31Z")
Our resident Researcher, Don a real live Scientist, has spent countless hours pouring through the literature and vetting what he has found and cross-referenced it for accuracy. It is the equivalent of a quantitative pool… --- ## [A word from TJ - Ben's Friends Unofficial response to Covid-19](https://forum.livingwithpsc.org/t/a-word-from-tj-bens-friends-unofficial-response-to-covid-19/3721)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 14, 2020, 3:47pm UTC](https://forum.livingwithpsc.org/t/a-word-from-tj-bens-friends-unofficial-response-to-covid-19/3721 "2020-03-14T15:47:24Z")
Good Morning Ben’s Friends, and I hope/pray it is for all of you. I have over the last 10 years gotten to know many of you and want you to know just how much I have appreciated all of you over the years, especially now. … --- ## [Who’s going Backpack-ing with Ben’s?](https://forum.livingwithpsc.org/t/who-s-going-backpack-ing-with-ben-s/3630)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [February 7, 2020, 8:27pm UTC](https://forum.livingwithpsc.org/t/who-s-going-backpack-ing-with-ben-s/3630 "2020-02-07T20:27:27Z")
You have a wallet, right? You wouldn’t think of going to the supermarket without it and telling the checkout clerk “OK, I’ll just run home and get my card” or “Gimme me a sec and I’ll call my banker for that info”. Of c… --- ## [Spotlight on our Member: SewMomma from Living With Eagle Syndrome Community](https://forum.livingwithpsc.org/t/spotlight-on-our-member-sewmomma-from-living-with-eagle-syndrome-community/3515)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [December 17, 2019, 6:59pm UTC](https://forum.livingwithpsc.org/t/spotlight-on-our-member-sewmomma-from-living-with-eagle-syndrome-community/3515 "2019-12-17T18:59:39Z")
Eagle Syndrome (ES) is a rare condition caused by the elongation of either or both temporal styloid processes, the pointed part of the temporal bones located below the ears. Symptoms include jaw pain and clicking, diffic… --- ## [Live in or near LA? Ben’s Friends needs you!](https://forum.livingwithpsc.org/t/live-in-or-near-la-ben-s-friends-needs-you/3466)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 1\ **Last updated:** [November 16, 2019, 3:09pm UTC](https://forum.livingwithpsc.org/t/live-in-or-near-la-ben-s-friends-needs-you/3466 "2019-11-16T15:09:16Z")
Hello Friends We’re currently working on a fundraiser video and our founder, Ben Munoz, will be in Los Angeles together with other community members to shoot interviews. If you would be willing to share your story on c… --- ## [DickD Reflects -- Full Article](https://forum.livingwithpsc.org/t/dickd-reflects-full-article/3471)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 15, 2019, 10:35pm UTC](https://forum.livingwithpsc.org/t/dickd-reflects-full-article/3471 "2019-11-15T22:35:17Z")
Ever Wondered What it’s like to be a Ben’s Friends Moderator? At the heart of Ben’s Friends are our Moderators, who play varied and interesting roles. Our communities wouldn’t be the same without them: they’re central t… --- ## [DickD Reflects on Being a Ben's Friends Moderator](https://forum.livingwithpsc.org/t/dickd-reflects-on-being-a-bens-friends-moderator/3470)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 15, 2019, 10:06pm UTC](https://forum.livingwithpsc.org/t/dickd-reflects-on-being-a-bens-friends-moderator/3470 "2019-11-15T22:06:03Z")
Ever Wondered What it’s Like to be a Ben’s Friends Moderator? At the heart of Ben’s Friends are our Moderators, who play varied and interesting roles. Our communities wouldn’t be the same without them: they’re central t… --- ## [Free Medical Care on 11/11 for Veterans](https://forum.livingwithpsc.org/t/free-medical-care-on-11-11-for-veterans/3461)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 7, 2019, 7:23pm UTC](https://forum.livingwithpsc.org/t/free-medical-care-on-11-11-for-veterans/3461 "2019-11-07T19:23:29Z")
Ben’s Friends has Partnered with Medici so that on This Veterans Day we can recognize the remarkable sacrifices of our amazing Veterans by offering free doctors consults on 11/11 through our doctor/patient communication … --- ## [Spotlight on our Members: Jane from LivingWithPsoriaticArthritis.org](https://forum.livingwithpsc.org/t/spotlight-on-our-members-jane-from-livingwithpsoriaticarthritis-org/3450)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 1, 2019, 3:04pm UTC](https://forum.livingwithpsc.org/t/spotlight-on-our-members-jane-from-livingwithpsoriaticarthritis-org/3450 "2019-11-01T15:04:13Z")
Spotlight on our Members: Jane from LivingWithPsoriaticArthritis.org Jane, who lives in Indiana, is one of our Living with Psoriatic Arthritis members, and one of our longtime moderators. She and our other moderators ke… --- ## [Should I Say ‘Person with a Disability’ or ‘Disabled Person?’](https://forum.livingwithpsc.org/t/should-i-say-person-with-a-disability-or-disabled-person/3410)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [October 12, 2019, 2:29pm UTC](https://forum.livingwithpsc.org/t/should-i-say-person-with-a-disability-or-disabled-person/3410 "2019-10-12T14:29:00Z")
Ben’s Friends Editor’s Note: Although this article is specific to Canada, it’s full of excellent points that could and should be topics for conversation and social change worldwide. Should I Say ‘Person with a Disabilit… --- ## [Do You Know A Medical School Hopeful](https://forum.livingwithpsc.org/t/do-you-know-a-medical-school-hopeful/3402)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [October 3, 2019, 9:58pm UTC](https://forum.livingwithpsc.org/t/do-you-know-a-medical-school-hopeful/3402 "2019-10-03T21:58:33Z")
Do you know someone who aspires to medical school or one of the helping professions? They may be interested in this volunteer opportunity at Ben’s Friends. Please pass it on! We have a limited number of volunteer patien… --- ## [Enjoy Safe Exercise at Home](https://forum.livingwithpsc.org/t/enjoy-safe-exercise-at-home/3322)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [August 29, 2019, 6:01pm UTC](https://forum.livingwithpsc.org/t/enjoy-safe-exercise-at-home/3322 "2019-08-29T18:01:36Z")
This article is written by Jacklyn Donalds; posted by Jennifer Moulder on feedspot.com Exercise can and should be considered an important part of your strategy in combating chronic illness – considering its important ef… --- ## [Spotlight On Our Member: Stephen from BAF](https://forum.livingwithpsc.org/t/spotlight-on-our-member-stephen-from-baf/3313)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [August 21, 2019, 8:36pm UTC](https://forum.livingwithpsc.org/t/spotlight-on-our-member-stephen-from-baf/3313 "2019-08-21T20:36:45Z")
There are so many fantastic people who make up the community Ben’s Friends! And every one of us has a story to tell. Periodically through Spotlight we’re going to “spotlight” a member and their story. With that in mind, … --- ## [Reminder about Email & Phone # Sharing](https://forum.livingwithpsc.org/t/reminder-about-email-phone-sharing/3309)
**Author:** [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Replies:** 0\ **Last updated:** [August 20, 2019, 12:19am UTC](https://forum.livingwithpsc.org/t/reminder-about-email-phone-sharing/3309 "2019-08-20T00:19:49Z")
Dear PSC Family, Please be reminded that we request no personal identifiable information be posted in the public forums in any of the categories. This would include your email address, phone number and in any scans or… --- ## [We are in the middle of Glacier Park](https://forum.livingwithpsc.org/t/we-are-in-the-middle-of-glacier-park/3286)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [August 7, 2019, 8:24pm UTC](https://forum.livingwithpsc.org/t/we-are-in-the-middle-of-glacier-park/3286 "2019-08-07T20:24:00Z")
Tomorrow we “Float” Please Share on more time… https://www.gofundme.com/help-support-rare-disease-communities --- ## [Weekly “Spot” for July 10, 2019](https://forum.livingwithpsc.org/t/weekly-spot-for-july-10-2019/3247)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [July 10, 2019, 3:54pm UTC](https://forum.livingwithpsc.org/t/weekly-spot-for-july-10-2019/3247 "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.livingwithpsc.org/t/simple-pleasures-can-go-a-long-way-to-increasing-well-being/3226)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 25, 2019, 10:00pm UTC](https://forum.livingwithpsc.org/t/simple-pleasures-can-go-a-long-way-to-increasing-well-being/3226 "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.livingwithpsc.org/t/spot-our-mistake/3218)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 20, 2019, 2:51pm UTC](https://forum.livingwithpsc.org/t/spot-our-mistake/3218 "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.livingwithpsc.org/t/spot-got-angioedema-know-about-our-foot-float/3217)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 19, 2019, 5:33pm UTC](https://forum.livingwithpsc.org/t/spot-got-angioedema-know-about-our-foot-float/3217 "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.livingwithpsc.org/t/being-gentle-on-ourselves/3208)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 14, 2019, 4:19pm UTC](https://forum.livingwithpsc.org/t/being-gentle-on-ourselves/3208 "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.livingwithpsc.org/t/virtual-reality-as-pain-therapy/3194)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 7, 2019, 2:52pm UTC](https://forum.livingwithpsc.org/t/virtual-reality-as-pain-therapy/3194 "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.livingwithpsc.org/t/foot-and-float-to-build-10-new-communities/3183)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 29, 2019, 3:32pm UTC](https://forum.livingwithpsc.org/t/foot-and-float-to-build-10-new-communities/3183 "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.livingwithpsc.org/t/it-s-okay-to-not-be-okay/3172)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 21, 2019, 10:56pm UTC](https://forum.livingwithpsc.org/t/it-s-okay-to-not-be-okay/3172 "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.livingwithpsc.org/t/what-makes-speciality-drugs-so-special/3164)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 17, 2019, 5:30pm UTC](https://forum.livingwithpsc.org/t/what-makes-speciality-drugs-so-special/3164 "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.livingwithpsc.org/t/chronic-illness-and-friendship/3148)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 8, 2019, 10:25pm UTC](https://forum.livingwithpsc.org/t/chronic-illness-and-friendship/3148 "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.livingwithpsc.org/t/april-27-news-item/3130)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [April 27, 2019, 8:11pm UTC](https://forum.livingwithpsc.org/t/april-27-news-item/3130 "2019-04-27T20:11:06Z")
“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.livingwithpsc.org/t/this-weeks-news/3114)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [April 18, 2019, 9:09pm UTC](https://forum.livingwithpsc.org/t/this-weeks-news/3114 "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.livingwithpsc.org/t/a-good-day-of-struggle/3084)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [April 6, 2019, 2:11pm UTC](https://forum.livingwithpsc.org/t/a-good-day-of-struggle/3084 "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.livingwithpsc.org/t/upcoming-events/3072)
**Author:** [@Bens\_Friends](https://forum.livingwithpsc.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 31, 2019, 7:35pm UTC](https://forum.livingwithpsc.org/t/upcoming-events/3072 "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… [Previous page](https://forum.livingwithpsc.org/c/bens-friends/22.md) [Next page](https://forum.livingwithpsc.org/c/bens-friends/22.md?page=2)