When “Rather Rare” Becomes “Done Well”

Ben MunozNovember 1, 2019

I remember talking, not so long ago, with one of our AVM veterans. He has been battling this disease for 41 years now. When it was first discovered no one within 500 miles knew what it even was, let alone how to treat it. He says that it was a very scary time. Not only because of major surgery as an 8th grader but also because that is what I call, “rather rare.”

Imagine, if you will, that 8th grader, well into the school year, dealing with all of the middle school insecurities, suddenly finds out that he has this rare “thing.”

And no one knows what it is. Let that sink in a minute. Imagine you are the 8th grade student getting all sorts of awkward questions at school and no one understands. “What is it?” “They think it’s called an AVM.” “What’s that?” “They don’t know.”

“Mr. Smith, I need an excused absence form. I’m going to not be at school next week,” “Oh why…… Oh yeah, that thing.”

“That’s right, at a time in my life when I’m like 99% of all American middle schoolers and I just want to fit in, I don’t fit in.” If I had surgery for a broken finger, I’d fit in. We talked about the whole issue of fitting in and it went much longer than the paraphrased snippets I’ve got here.

“But I’m ‘rather rare.’ In a world full of Quarter Pounders, I’m a veggie burger. That’s rare.” But that’s the beautiful thing.

If the AVM Survivors Group had been up and running, this member would have been able to tell me his story without the painful memories of not fitting in. Let’s face it, not fitting in gives a patient and their family a whole additional area of pain.

I am pleased to tell you about something that we are excited about. McGill University near Montreal is a very involved and comprehensive teaching hospital. They have a “Rare Disease Interest Group” that was formed by med students for med students. I could take the next three hours and tell you some of the things they are doing, but I won’t.

Their “Rare Disease Interest Group” has an overriding goal of helping those who are suffering from rare diseases to get the support and connections that they need. Because I think that we can all agree that when there is support and connections, the outcomes are almost always better in some way.

We are working with the RDIG to coordinate these possibilities but it is exciting and we are truly grateful for both the work McGill has already done and is doing and the partnership which could truly help both organizations. Imagine, a medical field where the staff is concerned about the whole patient. The possibilities are endless.

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Our New Ben’s Friends Classroom

Clasina FieldNovember 1, 2019

You must be wondering what Seenie has been doing these days. Well, I’ve been building our Google Classrooms and library where our Moderators and Interns will be able to learn the skills and tricks of the Moderator Trade. Right now, I’m about to stock our library with reading material and things like Slide Guides.

It will all be set up for independent learning, at your convenience. Of course, there are no grades and certainly no report cards. But there are things like questions and quizzes that can be submitted if you want to check your knowledge. When you do those, there will be a record of your progress, but whether you do those is up to you. Most things posted in the classroom have an option for questions and discussion, so if there’s something that you want clarified, there’s a place right there where we can discuss it without switching to email or another web address. TJ and I will be the so-called “teachers” and we can be reached in the classroom whenever you need us, 24/7.

There’s a steep learning curve for me, this high-tech paperless classroom, but it’s really exciting and I’m enjoying it! If you would like to have a preview peek inside (and maybe do some testing and troubleshooting for me) I’d love to have you join us. Let me know via your @bensfriends.org email and I’ll send you an invitation to the classroom. Eventually, all of our mods will be enrolled.

As high-tech as our electronic Ben’s Friends Classroom is, we decided to keep the exterior very traditional looking. (I think it’s really pretty, and notice the picnic tables for socializing!) We hope that you’ll like what we’ve done and that it serves all of you well.

Ben’s Friends Virtual Classroom

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Spotlight on Our Board Member: John Stamler

Ben MunozNovember 9, 2019

John Stamler, Ben’s Friends’ treasurer and a rare disease survivor himself, had a conversation with Garry Turner in the Episode 81 of Value through Vulnerability podcast.

John shared his inspiring work as a mentor to startups and his admiration for the entrepreneurs he works with who are so passionate about what they believe in.

He also talked about his experiences related to a rare heart defect which eventually led to his joining Ben’s Friends as a patient member in 2010.

Surviving an Open Heart Surgery and Joining Ben’s Friends

John shared that he was diagnosed with a rare heart defect in 2009 and went to more than ten doctors located in different cities such as London, New York, and Boston. He, however, did not feel treated well.

In March 2010, he finally met a surgeon at the Cleveland Clinic, Dr. Tom Mihaljevic, who has already seen a case similar to his condition.

He underwent an open heart surgery in May 2010 and then joined one of Ben’s Friends communities in June. And only a few months later, he ran a marathon in three and a half hours to raise funds for our cause. (Only after being given a full clearance by his doctor, of course.)

To give a clear picture of what Ben’s Friends communities are, John told Garry, “it’s all about connecting. Imagine you and me sitting in different locations. I’m diagnosed with, let’s just say, my heart defect. I’m scared, you welcome me, you make me feel like I’m not alone anymore.”

John considers our communities as almost like a lifeline to connect with people with a similar condition. The community helps people go through their day and he is grateful that Ben brought him in.

Our Safe and Secure Communities

John proudly shared in the podcast that our communities are safe and secure. People never have to give their full name when they join as a member.

He explained that it was really intended to protect the people who are sharing heart-felt stories. They don’t give out their real names so no one can find their information.

As John explained, “community stuff, when done right, can be very powerful, inclusive, encouraging and supportive.” And he feels so blessed that he learned this from Ben’s Friends which he was able to pass on to the other organizations he is working with.

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Ben’s Friends Members to Benefit from Cutting-edge Health Data Management Tool

Sascha GallardoJanuary 14, 2020

Members of Ben’s Friends patient communities can soon take advantage of a state-of-the-art technology that will enable them to manage their medical information in a secure multilingual digital tool, give them access to an online referral service for physicians and clinics, and let them participate in research that will benefit the rare disease community.

Ben’s Friends is partnering with Backpack Health to provide a custom data management app to its patient-members and their caregivers.

Initially targeting the Psoriatic Arthritis and Lyme Disease communities, this partnership is set to eventually come up with a customized tool for each of Ben’s Friends patient communities.

This app will be made available for free on iOS, Android and web.


Finding the best partner

Co-Executive Directors Clasina Field and Tom Lambdin have been on the lookout for this kind of technology for several months, attended no less than three big conventions, and vetted dozens of possible partners until they have found the one that meets their standards.

The idea of creating Backpack Health came out of its founders’ experiences with addressing a loved one’s health care needs. Mark and Diane Goldman’s son and Backpack Health’s CEO Jim Cavan’s niece had difficulties managing their health records especially when having to seek medical care while abroad where tons of information has to be translated into a foreign language.

“Jim and his team created this tool because of what a loved one had to go through. We know how close meeting the patients’ needs is to their heart,” Clasina said talking about the partnership.

“We want to partner with someone who will provide service to our members from the heart. And we found that in Backpack Health. We want only the best for our patient communities.”

Ben Munoz, President and Co-Founder of Ben’s Friends, underscores how the team values patient education. “At Ben’s Friends, we promote education and awareness, and encourage members to take control of their health information. It’s important to us that Backpack Health values the same.”

Patients’ benefit from the app

To really be able to find out how invaluable this tool is before rollout, Tom and Clasina took the lead in using Backpack Health.

Clasina recently signed up to Backpack Health before going on a trip abroad. “I was leaving on a trip, which gave me the ‘push’ I needed to complete my Backpack profile. When I had finished entering my basic ‘share card’ information including detailed medication info, and my provider details, I installed the unique link to my Backpack record on my phone lock screen. It’s all set up. I was ready to travel in no time!

Had she known Backpack Health earlier, she wouldn’t have had to go through a difficult experience while in a country where English is not the first language.

“One time, while in Germany, I was feeling poorly and I went to a hospital where the doctors barely spoke English. I tried to remember, and then failed to have them understand which medications I was taking. What a challenge, especially if you aren’t feeling well. I would have LOVED having my health record share card instantly translated into German.”

The Backpack Health could have also been really helpful during Clasina’s recent trip to the UK.

“The other time, while in the UK, I had a terrible Meniere’s attack. That’s extreme dizziness and non-stop vomiting and retching. The paramedics made me give my medical information to a lovely person on the phone while I had my head in a vomit bag. If only I could have shown them the access codes, they would have had everything I decided to share right there.”

Tom, on the other hand, is set to have a heart surgery which is currently a very new procedure. To qualify for this, patients need to meet stringent requirements.

Because of Backpack Health, the pre-op process has been a breeze.

“To gather all the records and get them evaluated would have been weeks, if not months, to process. The Backpack app allowed me to upload EMR from a dozen sources with like 12 mouse clicks.”

Tom received replies from the health institutions in as fast as one hour after submitting the requirements through the app. He also didn’t have to go through the hurdle of setting up appointments just to sign countless releases. Instead, it was the heart institute who called him to set up a pre-op appointment.

Making the app available to other communities

According to Jim, creating custom tools for the members of Ben’s Friends is something that the Backpack Health team is proud of and looks forward to.

Psoriatic Arthritis and Lyme Disease can be challenging to manage, and we are proud to tailor our digital tools to support both individuals and caregivers in their journeys with these conditions and look forward to working closely with Ben’s Friends to create additional support groups for its community members.”

Talking about the timetable for this project, Clasina said, “We hope that we’ll have custom versions of Backpack available to all of our members early this year. I’m really excited about it.”

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Ben’s Friends Brings Learning About Patient Support to the Next Level

Sascha GallardoJanuary 20, 2020

Ben’s Friends created a user-friendly online training facility that makes learning about providing support to patients simple and easy. Dubbed as Ben’s Friends U or Ben’s Friends University, it makes use of Google Classroom to create one virtual classroom for Moderators and another one for the Interns.

Using this G-suite tool, the Ben’s Friends team is able to build a “library” of links to learning materials such as documents, websites and video resources. Interaction between the teachers and students is also easy because the tool allows participating in learning activities, including evaluation, within the website just like inside a physical classroom.

At present, the Ben’s Friends U Moderators’ classroom contains guides about what Moderators do, how to approve new members and the values of every Ben’s Friends Moderator. Users can also learn more about chronic conditions and mental health so they are better equipped when communicating with members.

The Interns’ Classroom, on the other hand, allows users to learn basic member skills like creating a new account, posting a reply, and navigating a community homepage. Materials about Discourse, the software used to run the patient communities, are also available.

Who can use these classrooms?

The classrooms are exclusive and only those who have been invited to participate can enter.

Essentially, Interns and Moderators will be able to go to their classroom web address and do reading, submit assignments, message the instructors, ask questions and have group discussions all in one place.

The work is all individual progress so the Interns and Moderators visit and work in the classroom at their own pace and convenience. Learner progress can be easily tracked, and modifications can be made to the Ben’s Friends U content as the need arises.

Timetable and future plans

Co-Executive Directors and Ben’s Friends U instructors Clasina Field and Tom Lambdin started this project last October. With the help of some Moderators and Ben’s Friends President and Co-founder Ben Munoz, the alpha testing went on smoothly and the beta stage started within a few weeks.

The team is now applying some finishing touches and the Moderators and Interns can soon fully enjoy these learning facilities.

Ben is surely very proud of what the team has built. “The reason we are the #1 patient support network on the internet is because we have the best mods! This training and coaching is a big part of that.”

On his part, Tom cannot wait to see how this project further improves the already superb performance of the team. “The opening of the Ben’s Friends U campus is really exciting. Our highly skilled Moderators and enthusiastic I nterns are instrumental in keeping our communities the safest and most supportive on the internet. This will surely bring our work to the next level.”

Asked about the long term plans for Ben’s Friends U, Clasina said, “Eventually, we hope to introduce video instruction and live conferencing to the classrooms. These innovations we’re doing make collaboration among team members so much easier. And that is big for a team that interacts only virtually.”

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