Finding that boardroom management tools lacked some essential features, Spotlight YOPD chairman Nikki Cole turned to Guild's professional messaging platform.

Here, the former engineer in the IT and aeronautics sectors tells us how Spotlight YOPD manages to connect, discuss and progress its work using Guild.

Spotlight YOPD  shines a light on the fact that Parkinson's is not just a condition of the elderly; many are diagnosed under 50, mid-career with young families. Aside from raising awareness in the medical profession and the general population, the charity's aim is to improve access to research and support all those diagnosed.

Running a health-related charity with a diverse board comes with unique challenges. Aside from compliance with charity governance rules and protecting personal information, there is a need to bring together experts and board members in different situations, locations and time zones. We asked Nikki to tell us how Guild fits in to the charity's work.

Nikki Cole, chair of Spotlight YOPD


Q: How does Spotlight YOPD's board carry out its regular work?

Spotlight YOPD has recruited board members remotely over the last year - setting visions and goals for post-pandemic activity.

The result is a team of nine (still recruiting for three positions) with diverse knowledge and skills, based around the country. Monthly board meetings take place on conferencing platforms like Microsoft Teams or Zoom - costs being always critical.


Q: How does Spotlight YOPD use Guild to manage monthly board meetings?

Nikki sets up a new conversation thread within the 'Spotlight YOPD board' Guild group for each meeting.

Documentation such as the agenda, minutes, finance reports and draft budget are attached within the thread, making them available at the same time to all board members.

After the meeting, the Chair or Secretary updates the same thread with notes on the meeting, questions, additional documents, actions or changes to documents. Board members can continue to add to the same thread with additional questions, information or research; decision-making is immediately available to the whole board.  

When writing up the minutes, all the necessary documents are available to include and summarise - it's easy to see if anything is missing (which it rarely is). Everything to do with that meeting and any comments go into a single conversation.  


Q: What other work does Spotlight YOPD use Guild for?  

The charity also works on separate confidential research and operational projects, which have to be collaborated on remotely. For each project, the board discusses needs on a thread in the main group, and when a decision is reached, Nikki sets up a separate working group on Guild, within Spotlight YOPD's account.  

The board discussion and relevant documentation can be copied or summarised into the new working group, with a list of actions. This discrete group allows external partners and experts to be invited to contribute - for example, scientific experts, specialist researchers, technical advisors, or volunteers can be invited into the working group without compromising confidential information.

Everything from the sub-committee or working group is summarised and reported back to the board, making for an efficient and thorough process.  

Spotlight YOPD sometimes works with researchers around the world, who can be invited to observe a topic and offer insights without being obliged to attend meetings at specific times.


Q: How does this way of working help Spotlight YOPD carry out its projects?  

"The board can have both wide-ranging and deep discussions, making significant progress while only needing to talk 'in-person' in a videoconference once a month," says Nikki. "I wouldn't go back to meeting in person now, especially with the global aspect of a healthcare charity. We're increasingly working with international partners and working with Guild enables us to collaborate effectively across time zones and working styles."  

The age range of board members span from 20s to 60s, with experts in charity governance, psychology and neuroscience, based across the UK. Working with stakeholders who may have Young Onset Parkinson's means flexibility is built in to the charity's working practices. Individuals can work at any time (day or night) and the asynchronous messaging allows each individual to work in the best way for them.

Nikki notes that all the board members have different calls on their time and that other priorities can come up - waiting to set up mutually convenient meetings could mean actions can be delayed indefinitely, but with Guild, consistent progress can be made.

The fact that each person has the power to upload documents, comments and other input without going through a separate system allows everyone the ability to contribute instantly and equally.


Q: Why is Guild's 'privacy by design' so important for Spotlight YOPD?

Nikki explains that running a health-related charity involves dealing with stories and information that can be highly sensitive and being able to trust a platform to be GDPR compliant is essential.

Most social and messaging platforms have their origins in the States - Spotlight YOPD needed a different platform with a UK base and a focus on GDPR compliance and privacy.  


Q: Does the board find Guild easy to use?  

"Nobody has ever had to ask me how to log in or use Guild; it's been pretty intuitive for everyone," says Nikki. "Working with busy people, often giving their time free of charge, ease of use is essential to concentrate on the work of the charity rather than being distracted by the platform."  

Nikki's tips for using Guild for board communications:


"Stay on top of the messages in each conversation - keep up to date as comments come in so that you can give them the thought they deserve at the time. Your messages should be treated with the same attention you give contributions at board meetings."

"When you're having text-based conversations, you need to check the emphasis and meaning of each comment - people can make mistakes when typing or using voice-to-text, and there is room for misinterpretation. If something looks wrong, double-check it's not your interpretation that's wrong and take advantage of the fact that you can always ask for clarification."  


Q: What is Young Onset Parkinson's and what is Spotlight YOPD's mission?

Spotlight YOPD is a small charity raising awareness of Young Onset Parkinson's. It was founded by journalist Gaynor Edwards who was diagnosed with YOPD at the age of 42. Often thought of as 'something that happens to older people', Parkinson's Disease also affects younger ages with symptoms and outcomes that differ markedly.

The word 'disease' is often considered a misnomer, it should more accurately be referred to as a 'syndrome' - undoubtedly it is a condition which is the subject of much misunderstanding.   People diagnosed with YOPD (before the age of 50)- roughly ten percent of all those with Parkinson's - are thought to be more likely to have a genetic link involved in the condition.

Potentially living with the condition for decades they offer invaluable insight to researchers. PD is currently the fastest growing neurological condition - across all age ranges.

Recent speculation suggests that the Covid pandemic may see many more people diagnosed with Parkinson's and related conditions - as observed after the Spanish flu pandemic.  


Q: How can you support the work of Spotlight YOPD?

Spotlight YOPD is recruiting fundraising experts to its board. If you have expertise either in community fundraising or grant applications, Nikki would be happy to talk to about becoming a board member. Nikki can be contacted through Guild or by email on [email protected]

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