Author Archives: Bfboard

Next Board Meeting: Wed May 16 2018, 9am Pacific, 11am Central, 12pm Eastern

• Communities to be launched next: Sarcoidosis, Synovial landing page, PsA landing page
• Student moderators are working out well. Students can apply at http://internship.bensfriends.org.
• Intern Fareed Mazhar working on SEO.
• Intern Amy Mei working on PR.

• Cash balance: stable. Expenses: stable.
• Top fundraising priority: major donor campaign “Change Lives”; companion web site in development now.

Executive Updates

• Jeremy Block nominated to join the board. Voting to take place on Basecamp.
• Shared Ben’s Friends Resources folder is live and accessible at http://resources.bensfriends.org
• Ben to attend 8th Annual World Orphan Drug Congress in Washington D.C. April 27 2018.

• New Crohn’s community set to launch by August 31

• September campaign
  • Raise remainder of what’s needed for 10 communities
  • Use Crohn’s launch as example of what’s to come with the other 9 communities
• Major donors
  • Oct/Nov/Dec focus
  • Growth plan (prospectus) close to being done
  • Roll out at small events
    • San Francisco in Oct
    • New York
  • Ask advisors to invite friends in the area
  • Individual follow up after events
• 10th anniversary
  • Need a 10th anniversary logo to use in December campaign and throughout 2018
  • Need some type of celebration
• Year end campaign
  • Working on strategy and theme
  • Will feature 10th anniversary

• Slide deck update completed—can be used with various audiences
• Ask video has been updated with new stats and VO from Ben
• Outreach to 7 Bloggers/Journalists; 2 have responded
• INK Magazine: in talks for profile article in travel mag that could reach 1 million+ readers

What is our One Most Important Thing this month?

• Last month was: finish data migration to Discourse
• This month it is: expand fundraising efforts

Next Meeting

• Board of Directors, Wednesday, Oct 19, 2015, 10am Pacific, 12pm Central

What is our One Most Important Thing this month?

• Last month was: get our communities fully migrated to the new platform.
• This month: focus back on fundraising, including hiring development staff

Platform Migration Updates

• Going even better than planned
• Tom and Rose are handling everything from our side.
• Neil and Arpit are managing everything from Discourse side.
• Migrations Completed: Lyme, Myositis, OPMD, Eagle, Ehlers-Danlos, Amyloidosis, Polyneuropathy (CIDP, GBS, CMT), Narcolepsy, Mast Cell, ADHD, ADEM, ALD
• Migrations Todo: AVM, VWD, PSC, Ataxia, Synovial, Myeloma, ASD, Fibro, Brain Aneurysm, GPN, Lupus, PSA, Rare Diseases, Erythromelalgia, TBI, Sjogrens
• What’s working: Discourse migration scripts, leadership from Tom, Rose, and Neal
• What’s not working: user interface design

Fundraising Updates

• Director of Development job posting: http://www.idealist.org/view/job/4K6k6SwNjtnp/
• Talked to consultant Victoria Corcoran about getting her assistance with interviewing/vetting
• Traditional fundraising strategies: corporate philanthropy, wealthy individual philanthropy, foundations
• Non-traditional fundraising strategies: peer-to-peer, cause marketing, product/service revenue
• What’s working: lots of interest in the position
• What’s not working: no clear fundraising strategy, no concrete hiring/interviewing plan

Next Meeting

• Board of Directors, Wednesday, June 22, 2015, 9am Pacific, 11am Central

Hi, everyone, I hope this message finds you well. Our next board meeting is Wednesday March 16, regular time! 🙂

Second Fundraiser Scheduled

Unfortunately, Indiegogo was not able to extend the fundraiser deadline to February 29, Rare Disease Day, so the main holiday fundraiser ended earlier than we planned.  We still raised enough to get started (see below) but since we didn’t have time to roll out the fundraiser to everyone (including the board of advisors) we have scheduled a smaller, second fundraiser to run later. Rose will be in touch to get your help with that fundraiser.

New Campaign: http://donate.bensfriends.org

Platform Migration Update

The good news is that the main holiday fundraiser raised enough for us to get started on the platform migration and we’ve already gotten started.

During a call last week, Jeff Atwood, founder of Discourse (leading discussion software), pledged to get our communities successfully migrated over. The integration teams of both Ben’s Friends and Discourse have already begun testing data migration.

Below is a screenshot of our Amyloidosis support community migrated to the new platform. This is amazing to see!  We could not be more pleased!  🙂

Medical Advisory Board

Thanks to Eric for connecting me to Professor Jeremy Block of the Mount Sinai School of Medicine. We had a great conversation today and would like to continue the momentum by creating our first medical advisory board. Jeremy would like to get involved, starting with some introductions to rare disease doctors and researchers he knows who would also like to contribute! I think it’s a brilliant idea and kudos to Jeremy!

Edit: added medical advisory board update and postponed second fundraiser

Hello and Happy New Year, everyone!  I hope this message finds you well!  Our next board meeting is on Wednesday, Jan 20 at our regular time.  Talk to you then!

December 2015 Indiegogo Fundraiser Raised $24,685

Thanks to the generosity of our past donors and friends and family, our December 2015 Indiegogo fundraiser raised $24,685!

Rose emailed everyone a special thank you email immediately upon donation.  Qiana posted regular IGG updates for donors.  And today, I’m mailing out thank you notes to everyone who gave us their mailing address.

 

Proposal for 2nd Indiegogo Fundraiser

Unfortunately, we were not able to work with Indiegogo to extend the deadline to February 28, Rare Disease Day.  The additional six weeks would have been used to roll out the fundraiser to the remainder of the board’s personal contacts and then to advisory board’s contacts.

Rose and Qiana developed some nice systems to manage and connect with various audiences, run concurrent campaigns, and request/manage thank you’s from the communities.  Using these tools, we were only able to contact: 1) past donors, 2) Ben’s LinkedIn, and 3) Scott’s LinkedIn.

I propose that we launch a 2nd Indiegogo fundraiser for the remainder of the board and the advisory board (their contacts).  We’ll discuss on Wednesday’s board meeting.

Community Micro-Fundraisers

We tried without success to engage our communities for this Indiegogo fundraiser.  I believe the lack of engagement is because members feel connected to their community but not connected to the parent organization.  Rather than trying to force a connection, I propose that we leverage the existing connection by launching micro-fundraisers.  By “micro-fundraiser” I mean that each community runs a fundraiser to raise an amount proportional to its membership size, with the goal to migrate that community to the new platform.

If members are connected to their community more than to the parent organization, my belief is that they’ll be more engaged with the community fundraiser.  Members have occasionally asked me about an “awareness walk” for their community, but I can’t recall being asked about an “awareness walk” for Ben’s Friends.

We’ll discuss on Wednesday’s board meeting.

Platform Migration

The primary goal of the fundraiser was to pay for the platform migration.  My hope was to raise $100,000 to pay for consultants to lead the way and migrate the data.  We might still make that goal with the 2nd fundraiser and three dozen micro-fundraisers, but regardless, we can still get started migrating the communities.  This week, I contacted Neil Lalonde at Discourse about getting started and will keep you posted.

Hey, team, I hope you had a great Thanksgiving!!

Our 2015 Fundraiser is Live!!! 

1. If you haven’t had the opportunity to donate yet, here is the official campaign link: http://donate.bensfriends.org. This is our most important fundraiser ever, so we need you more than ever!

2. If you intend to donate more than $1,000, please let us know first and we’ll set it up as a matching donation with the public which will double your impact!

3. Senior executive and a good friend of mine, Qiana Patterson, has joined us for the next month to lead the fundraising campaign. She has a deep business background and will be coordinating the team (Ben, Rose, Tom, Seenie) to make our most important fundraiser ever a big success.

4. The official fundraiser video is below in case you haven’t seen it:

https://www.youtube.com/watch?v=mpzinLG1_kk

5. On behalf of the 125,000+ patients that visit our communities each month, thank you so much for your generosity!  We are getting closer to 100% board participation in this fundraiser.  To donate => http://donate.bensfriends.org

Hi, everyone, I hope you are all well!!  It was a very busy and productive September.  Our top priority has been preparing for our end-of-year fundraiser.  Here is a quick summary of everything.

1. END OF YEAR FUNDRAISER

This is the board’s top priority right now.  Our fundraiser is scheduled to soft launch on Oct 25 and then officially launch on Nov 1.

During the fundraiser, we’d love if 100% of the board of directors and board of advisors could make a donation.  Whatever you can afford — every dollar helps.

• Official Fundraiser Video: huge thanks to Jim Walters for donating his video production services

   

• Indiegogo Campaign: still undergoing final revisions, but you can preview it here.
• Member Videos: we are coordinating to record a series of videos of members sharing how our communities has made a difference AND patients sharing how they don’t have a community yet so please donate so we can build them one.
• Pitch Deck: here is the current draft of the pitch deck that we discussed for any conversations you may have with possible partners or sponsors.  Now that the video and campaign are ready, this is the next priority.  It should be ready by the end of October.
• Corporate Matching: this is definitely where you can make a huge impact.  We’re looking for companies to pledge to match individual donations.  Companies can set the amount and time period during which they will match any donations.
• Adopt a Community: we are offering companies with an interest in one specific disease to sponsor that community for one year for a $5,000 donation to the campaign.  We have one company so far.
• Match a Friend: small-scale matching of individuals who pledge to match a smaller amount, either for a specific friend, or for the next X hours (for example)
• Marketing Plan: we talked to some experts about spreading the word.  1) Weekly updates via email, 2) weekly updates via Indiegogo, 3) Twitter outreach to influencers, 4) community message broadcasts to members.

2. COMMUNITY UPDATE

It has always been our moderators that have made us a special place for patients to find the connection they need.  Amazing communities require amazing moderators.  And amazing moderators require amazing moderator support.

Led by Tom, the mod support team have done a great job (especially lately) recruiting and supporting new moderators.  Here is screenshot of the (private) portal for moderators only.

The platform migration is scheduled to start right after the fundraiser concludes.  The plan is still to migrate the discussions from Ning to (open source) Discourse, the company that runs the very popular Stack Overflow, and then combine that discussion engine with a WordPress site for each community.  Thoughtbot is ready to consult with the development and migration.

3. WEB SITE

The old web site was looking very dated, so we did a quick redesign which is now live.  Once we get past the fundraiser and have more time, we’d love to discuss with advisor Kevin Kearny of Hard Candy Shell to help with a more professional branding and site design.

4. STAFF UPDATES

Interim ED Gretchen Flatau is no longer with Ben’s Friends.  We are very grateful to her for the work she did organizing our accounts and paperwork.  After a successful fundraiser, the next top priority will be recruiting a permanent executive director.  Feel free to send us any names of executive director rockstars you think would be a good fit, location does not matter since we all work remotely.

5. BEN TRAVELING TO CALIFORNIA

I’m (Ben) traveling on business to LA on Nov 10 and then to SF Nov 15 (tentative).  Would love to meet each of you for a quick coffee, if you are available.  I’ll reach out individually.

6. NEXT BOARD MEETING

We normally have our monthly board meetings on the 3rd Wednesday but next month is our quarterly advisors call, so we’ll want to do it perhaps the day before, date/time TBD.