Spotlight on Our Spool: The Smith-Kingsmore Syndrome Foundation

A conversation with Kristen Groseclose, President and Co-founder of the SKS Foundation

Smith-Kingsmore syndrome (SKS) is a rare, neurodevelopmental genetic disorder caused by changes (disease-causing variants) in the MTOR gene. SKS impacts the digestive, endocrine, metabolic and nervous systems.

For families with a loved one living with SKS, the Smith-Kingsmore Syndrome Foundation (SKSF) is an invaluable support and advocate. SKSF improves the quality of life for children and families impacted by SKS by supporting cutting-edge research and collaboration among medical professionals and strengthening community through worldwide awareness.

Thread Strategies had the pleasure and honor of working with the SKSF team through the Chan-Zuckerberg Initiative’s (CZI) Rare as One grant program. In this Spotlight on our Spool, we are delighted to speak with Kristen Groseclose, President and Co-founder, about the incredible benefits that strong funding and consulting partnerships can bring.

Thread: As a grantee, how has CZI supported you beyond your grant funding and acted like a truly invested partner  in your work?

We are very grateful for the multitude of opportunities CZI has provided our nonprofit that focuses on an ultra-rare disease. Beyond providing critical dollars that organizations like ours need, CZI has also provided us with training and access to expertise that has alerted us to areas necessary for the health and success of SKSF. Thanks to these trainings, we are now confident in utilizing our new CRM and accounting system, developing pitches for media, and becoming aware of systemic hindrances that could impede access for marginalized groups within our community. The resources CZI has made available to us have allowed us to identify what we don’t know and find answers.

Since becoming a grantee, we have grown in both confidence and impact. In less than a year (our CZI partnership started in January 2022), our all-volunteer organization has evolved from a series of Excel and GoogleDoc spreadsheets into CRM and Quickbook platforms and hired our first paid staff member. To achieve this evolution, we needed funding and assistance in understanding processes and available resources, both of which were provided by CZI’s partnership. Now as a result, we operate more efficiently and professionally and can absorb more information and plan strategically. We look forward to the coming year and its challenges, confident in our ability to better execute our mission.

Thread: What was fundraising like before CZI introduced you to Thread?

Kristen: Before Thread, we had my SKSF email to send thank you emails to smaller donors, SKSF stationary for larger donors, and a GoogleDoc to track donors. It took me many long hours to acknowledge donors after big fundraising pushes. Our fundraising efforts were highly manual, inefficient, and unsustainable.

Thread: A centerpiece of our partnership was helping SKSF to migrate onto a proper CRM. What was that experience like for you?

Kristen: It was a great experience, simply put. Thread always struck the right balance between sharing expertise and pushing us to think through what the best solution was for our situation (we tried “can you just tell us?” a few times, to no avail!).  They really “taught us to fish” both from a technical standpoint as well as thinking through what we really needed to get from our donor base and how we could feasibly get there.

Thread’s partnership dramatically reduced the amount of work it would have taken us to get a CRM in place, from the basics of pulling together all our existing donor information (“basic” but so many tangential things to consider), to shortlisting vendors and guiding us through the selection process, then to helping us set up the CRM in a way that best meets our needs.

Frankly, even if we’d had the capacity to do this work ourselves, there’s no way we would have known where to start!  Additionally, Thread was a true partner through the whole process – they really got their hands dirty with sweating all the small stuff for our data entry into the CRM and ensuring that all our documentation and CRM mechanics worked for us, while consistently elevating our thinking to the higher purpose of how we fundraise in such a niche space.

Thread: Our partnership through CZI also made it possible to create SKSF’s very first development plan. What value are you seeing in having a development plan?

Kristen: As with most organizations our size, we’re pulled in many different directions from both a strategic and fundraising perspective, and having Thread clearly lay out how we should think about the near-term fundraising goals and map out how we get there with our small team is incredibly valuable.  We trusted Thread enough to be completely candid about our hopes and worries for SKSF, and they made us feel reassured and supported both personally and professionally. Having this development plan lays a very strong foundation for our new executive director, as she doesn’t have to build the plan and timeframes while executing the strategy.