Living With Raynaud's by Ben's Friends

Living With Raynauds Disease

April 27 News item

#1

“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. You’ve probably noticed the same. Well, in mid-April, a Ben’s Friends team (TJ, Seenie, and mod Stoney from PsA and Sjogren’s) along with Ben himself attended the World Orphan Drug Conference (WODC) in Washington DC to change that reaction. It was an eye opener, and we hope not only for us!

Why were we there? Ben’s Friends has been growing steadily: over the last couple of years, we’ve gone from having twenty-some to forty-some communities. As we grow, of course, so do our expenses. We are grateful for the donations, large and small, that we receive throughout the year, but an operation the size of ours needs some revenue a bit more regular and predictable than donations and grants.

We talked to dozens and dozens of people. Researchers, sales reps, data managers, bio-geneticists, economists, people with PhDs, and each one of them has an interest in orphan drugs. It was amazing. We tried hard to hone in on what was important about us in terms of orphan drugs, what should be important to everyone working on drug therapies, really. That’s YOU!

So many were amazed by our communities and in turn, by you. What we have at Ben’s Friends is a very special thing. As a group we don’t have a political agenda. Nor do we advocate for anything specific. We focus strictly on the emotional and social well being of those struggling with rare conditions. No sales. No marketing. No database of information. Just people willingly giving their time, experience, and knowledge to each other. Although Ben’s Friends doesn’t track anything via our membership or communities, we know we have a wealth of extremely important information available to the right people for the right reasons.

Over and over we told them that Ben’s Friends is in a position to help researchers and manufacturers gain a deepened understanding of exactly how having a rare disease can affect a patient’s life, beyond the physical data that they can get from a blood draw and other measurements. These are very smart people who recruit patients like you for clinical trials, only to lose many of them midstream because the patient stops participating.

You know why patients quit on them! It’s all about the social and emotional issues, isn’t it? We explained to researchers and marketers: it’s hard for patients to be concerned with your scientific research data when their real issue is "how am I going to buy groceries this week, get to the school meeting, attend the doctor appointments, and put my hours in at work, when I’m a hot mess because of this disease?”

You get that! Of course you do! Anyone reading the discussion threads on the public parts of our communities will get that. The real issue is how this rare disease affects your social and emotional life. And you would tell them the exact same, wouldn’t you?

Ben’s Friends’ niche in the bigger patient portrait is your social and emotional experience and your disease burden. Our commitment is to social and emotional peer support, from your perspective. We told the researchers and the marketers that, over and over. The good news is that they’re starting to get it, and seeing its crucial relevance to them. We think that helping the scientific community understand your experience and your disease burden is worth our effort.

Our aim in going to the WODC conference was to find sponsors and partners who would be willing to pay to have their logo appear at the bottom of some of our web pages and emails. It’s a way for them to support you, and us, without actively selling any of us anything. Going forward, when you see a company logo on your Ben’s Friends community, you can be sure that it’s a company that “gets it.”

We hope that the presence of static sponsor logos at the bottom of our pages won’t be too intrusive and if you’re not interested you’ll just scroll on by. But if you’re feeling curious about a particular company or organization’s logo, you’ll click and have a look at where the link leads. The choice is yours, no active sales involved.

So TJ and I (Seenie) set the Ben’s booth up in the Gaylord Convention Centre without any problems. Most of the furnishings had been home sewn in Montana by TJ’s very skilled and talented wife, Tenia. There were also a few additions which flew in with Seenie from the Canadian hinterland. Next to the slick, high tech booths of pharmaceutical and stem-cell therapy companies, ours was comfy and homey and cosy. Much like your Ben’s Friends community!

You know what? They loved it! We had many compliments from other exhibitors, word quickly spread, and soon there was a steady stream of visitors wanting to know more about Ben’s Friends and what sponsorships and partnerships we were offering. There was great interest shown in both our organization as a whole, in our communities, and our members. It was a very exciting time, not to mention busy. Here are TJ and Seenie at the Ben’s Friends booth with a visitor from a rare disease organization in India.

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Ben was there as well, of course, and met several other exhibitors. On Friday evening, after the booth was all packed up, some Ben’s Friends members joined Ben and us for dinner at a local oriental buffet. It’s always exciting and wonderful to meet online friends in person! Our only disappointment was that the group wasn’t as large as we had hoped: worse than usual traffic problems (and we’ve heard it’s always bad around DC) made it just too difficult. Those that did come, though, most from the area surrounding DC, and two from North Carolina (!) had a wonderful time.

Below are local Ben’s Friends members Dianne and Lesleye, with Ben and Moderator Sharon from New York.

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So have we come up with any sponsors? Yes we have! And we’re hoping to find more. Meanwhile, keep a look out for the company logos down at the bottoms of web pages, now that you know those are helping to pay the rent. Remember, we will never sell your personal data or release your email address to anyone. We keep your information private and always will. Our new sponsors know this and care enough about our mission, which is actually you, to sponsor Ben’s Friends anyway!

The butterfly wings and banner, the runner, and the homey touches have all been packed away, but no doubt they’ll make another appearance before long. When and where? That remains to be seen.

NEWS FLASH: Our message was even better received than we thought! TJ and Seenie have been asked to be Faculty members and presenters at the Orphan Drug Americas Conference in San Francisco this July! More to follow.

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This article was written by Seenie, a bensfriends.org moderator whose home community is Living with Psoriatic Arthritis. She’s Canadian, eh? and after sorting the moderator emails from all the communities or drying out from her pool workout, you’ll probably find her in the kitchen cooking with wine. Sometimes she even puts it in the food!

Ben’s Friends weekly news is produced and edited by Azurelle.