April 2024 updates from PFS Network
We are pleased to provide an update on fundraising, research and awareness efforts for April.
While it was a slower month of fundraising comparatively, it brings us close to halfway of our 2024 fundraising target.
In January we announced our 2024 fundraising campaign with a target of €200,000 and a focus on getting more family members & loved ones to donate.
In April we secured an additional €4600 in funding, bringing our total funds raised to €88,300, or 44% of our target for 2024. We are thankful to all who donated in April, including generous donations from family & loved ones.
The ratio of donations from family & loved ones decreased in April, however this number was still higher than last year’s.
11% of donations received in March came from loved ones, down from 13% in February, but up from less than 5% in 2023.
The average amount contributed by loved ones was €1050, 15 times larger than the average amount contributed by patients.
So far this year, 58% of our total funds raised came from loved ones. A further 33% came from a grant and the remaining 9% came from patients.
To find out what we can do with more family support, and why it’s so important they get involved, check out our latest fundraising campaign.
Research progresses steadily
We are pleased to report that sample collection is nearly complete for our genetics study.
We have now received back 143/150 samples required for the study. Sequencing of the samples is underway and we expect data to be shipped to the University of Tampere soon.
If you have received a kit and still not completed it, please do so immediately or get in touch if you are experiencing issues. Some patients are at risk of being replaced if they do not return kits soon. If this is you, you have received an email from us privately.
With a reserve cohort of patients available, we have now closed applications for this study. A huge thank you to everyone who has participated.
In April, members of our team also paid a visit to Dr Nadine Hornig and her team in Kiel.
We spent time with Dr Hornig and her team in the lab, where cell culturing continued and some experiments, including RNA sequencing, have begun.
One thing that was apparent is that this stage of any patient-focused molecular research is very time consuming. Cell culturing is painstaking, meticulous work, which can take many months to complete. Dr Hornig and her team urged patience during this important phase.
We will provide more updates on this study as they are available.
New Economist article and new media opportunities
In early April, John Phipps from The Economist’s 1843 Magazine published an article on the disease.
Receiving appropriate and balanced coverage from one of the world’s leading publications is another landmark moment in the history of the issue.
The article provided appropriate recognition of the breadth and severity of symptoms, particularly physical symptoms which are frequently underreported. The article also covered the lack of predictive factors and how easy the drug is to access.
A big thank you to all the patients who bravely told their story.
On the back of this coverage, we’ve been contacted by three different outlets interested in covering the issue further. Two of these outlets are in the UK and one is in New Zealand. They are all looking for patients in these regions to speak with.
If you are willing to share your story publicly, or even privately for background, please get in touch for more information.
With gratitude,
PFS Network team