In this conversation, we discuss the importance of funding for research in the charity sector, specifically for ME, CFS, and long COVID.

The majority of research funding comes from charities, with only a small percentage coming from the government for other diseases, hence the need to emphasise the power of an established and reputable organisation in the charity sector. The example of the Cystic Fibrosis Trust is an inspiring case of how focused efforts and resources can lead to significant improvements in a niche illness. We compare the fundraising efforts for ME/CFS with other diseases like MND and Parkinson's, noting the disparity in funding despite the lower number of people affected by ME/CFS.

Hopefully this provides an overview of why the charity sector is so important, and inspiring that even diseases with low numbers of people were able to drive such huge change!

Apologies that my camera dies right at the end of the call, but Peter wraps up the discussion for us.

Hope you enjoy!

TIMESTAMPS

00:00 Intro
03:15 Importance of Funding for Research
04:13 Sources of Funding for Medical Research
09:02 Funding for Parkinson's Disease Research
11:10 Funding for Cystic Fibrosis Research
15:22 Funding for Motor Neuron Disease Research
23:31 Funding for ME/CFS Research
26:07 Need for Fundraising and Driving Cash into ME Research
30:14 Harnessing the Engaged Patient Community
32:15 Comparison of Fundraising in ME Charities
34:23 Sources of Funding
35:11 Legacy Giving and Challenges
36:35 Spending on Fundraising, Support, Research, and Advocacy
37:57 Comparison with Other Diseases
40:46 Fundraising Strategies and Professionalism
44:12 Importance of Fundraising Spend
46:05 Lessons from Successful Charities
48:16 Overcoming Stigma and Misconceptions
51:48 Long-Term Trends in Income
56:09 Challenges and Overlapping Issues
58:47 Learning from Other Disease Charities
01:02:21 The Impact of Legacy Giving
01:06:58 Targeting People Close to Those with the Disease
01:08:24 Engaging Community and Faith Groups
01:09:38 Involving Community Groups in Fundraising
01:11:12 Engaging Companies and Offices
01:14:40 Learning from Other Charities: Parkinson's UK
01:15:28 Customer Journey: First Awareness of the Disease
01:16:13 Customer Journey: Joining the Charity
01:17:18 Customer Journey: Getting Involved
01:18:23 Search Engine Optimization and Visibility
01:23:42 The Customer Journey
01:32:19 Key Takeaways

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