Volunteers, Supporters, and Friends,
I hope your year is off to a great start. Ben’s Friends’ year is certainly off to a great start. Here’s a quick summary of some of the things going on. I’m happy to elaborate on anything, but I wanted to get at least a brief update to everyone here before the end of the month.
1. Successful Year-End Fundraiser!
Ben’s Friends has been running year-end fundraisers since 2007, but this was our most well-run, best-organized, professional online fundraiser so far. Rich did a phenomenal job leading the way. During the process, we created a number of templates and lessons that we’ll reuse again and again in future fundraisers. Great job to Rich and the entire team !! (We’ve already reserved his services for our 2025 fundraiser.)
Last year, we had a number of board members retiring (to the board emeritus) after nearly a decade of dedicated service. We are currently filling those available slots with some wonderful human beings, and then expanding. Please welcome to Matt and JC as our newest board members. We’re still interviewing and looking to add 1-3 additional members.
3. Patient Advocacy Internship
Our patient advocacy internship continues to expand and evolve. These are typically undergraduate students passionate about patient advocacy and/or looking for volunteer opportunity ahead of grad school. Huge kudos to Jamie and Richard for your efforts here.
4. Rare Disease Day – Feb 28 2025
Every day, on the last day of February, NORD promotes rare disease awareness. We’re currently discussing on we’ll be involved this year. TBD.
5. Strategic Planning
The start of the year is always a good time to reflect on our mission and how we can best support. Our mission is to connects patients living with a rare disease to a supportive, understanding, and life-changing community.
Currently, Jamie, Richard, Mark, Sharon, and Merl are taking a deep dive, looking at the rare disease ecosystem, looking at our own strengths and weaknesses, to make sure we are doing the right thing by rare disease patients, volunteers, and donors.
If you would like to get involved in these discussions, let me know here or via DM.
On behalf of the thousands of patients you help every month, thank you so much.
Thank you for your time and support!
Much love to each of you from Austin TX!