Category Archives: Uncategorized

Board Meeting Held:

June 10, 2020, 9am Pacific, 10am Mountain, 11am Central, 12pm Eastern

Community Updates

• Regular blog posts are getting published to BF Blog site for our newsletters
• Regular newsletters are being released to keep friends and supporters updated
• Clasina leads in running mods training through Google Classroom to improve communities
• Student intern program is expanding to build up interactions and activities within our communities
• Pavilion Consulting is being hired to lead the community home page redesign
• Learning how to self-host communities is being explored to help lower costs in hosting our 40+ communities
• BF partners with Backpack Health to expand patient services

Fundraising Updates

The following small projects are being carried out to bring in revenue for Ben’s Friends:

• Partnership with various organizations such as with Science 37 to gain sponsorship,  JC Muyl is leading the way
• NW engineers is building patient registry proof-of-concept
• Running a test Patreon campaign for PSA

Board Meeting Held:

Tue, Nov 12, 2019, 9am Pacific, 10am Mountain, 11am Central, 12pm Eastern

• The GoFundMe page is live. We’ll start to promote it on Thanksgiving.
• Rosemarie and Sascha sent out a donor quarterly newsletter last week and so we have our donor list ready for our emails.
• Rosemarie and Sascha have a series of fundraiser emails ready to go.
• Ben will fly to LA on Nov 23 and to NYC Nov 19-20 to record fundraiser videos with Eric, Jeremy and patients.
• Patrick is leading the way on corporate outreach for the holiday fundraiser.
• Ben added some matching tiers and perks. Open to ideas on this.

Board Meeting Held: Tues, October 9, 2018  9am Pacific, 11am Central, 12pm Eastern

• Team welcomes back Deb Hickinbotham. Deb started off as a moderator of TN, and then GPN, and then joined the board of directors before taking some time off.
• The search for a new Director of Development and Interim Executive Director will commence early of 2019, after our year-end fundraiser.
• Team welcomes two new student interns starting this month: Arjuna, who joins student moderator group and Fareed, who works on generating PR to turbo boost fundraising efforts and moderator morale.

• The Grantwriting Team (Sinead Thornton, Christine Harmel, Angela Ryan, and Rose Andrade) made first formal attempt at applying for grants from corporate social responsibility departments and foundations. Two grants were applied with more coming.
• Sinead Thompson represented Ben’s Friends at the annual Global Genes Conference in Irvine, CA. She focused on networking with organization capable of supporting our work.
• A team is launching a pilot program “Donate your Birthday on Facebook” in which members are encouraged to pledge to donate their birthday to their patient community to raise an amount of $50-$100 from their friends and family.
• It’s almost time for our annual fundraiser. We’ll be following the familiar blueprint of a good fundraiser video, sent to a group of good friends, and ask for their support. Annual fundraiser will be launched before Thanksgiving.

• Usability issues on the current platform (Discourse) had been pointed out  as one of the reasons for lower traffic recently within our communities
• A big member survey “How are we doing?” will be sent among members to ask the community for feedback and suggestions on how we can continue to improve Ben’s Friends communities.
• The Mod support team currently experiments with Workplace at Facebook.

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

Data migration about 50% complete.

• 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.

Thank you, donors!

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.

Rose and Qiana’s email templates for various concurrent campaigns.

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.

People join a *tribe* when they join a patient community.

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.

The proposed architecture of the new platform.

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