Are we making a difference?
Having made our first grant in July 2015 we thought it would be helpful to ask some of those charities and good causes we have helped with main grants to let us know what is happening. Their reports help us improve how we approach our grant making and how we can better unearth those great causes out there that we could help. Here’s what our friends had to say about the projects we supported.
First up is Tiger Kloof School in the township of Vryburg, South Africa where our grant enabled wi-fi to be installed and covered the running costs for the first few years.
The school’s Director, Gail du Toit, gave us this update.
“The funds enabled us to register with a new Internet Service Provider and it allowed us to install necessary hardware to expand the range of our Wi-Fi in the high school. The possibility of getting fibre is very remote seeing that we are 12km away from Vryburg which does not even offer fibre connections to local businesses and private homes. We previously had a 2MB/s download speed and now have a 20MB/s download speed which is way better bearing in mind that the entire high school used (still using) the same connection.
Many times, in the past, our administrative work was affected when classes were busy on the internet. It became so slow in the administrative offices that we sometimes had to do, e.g. our internet bank, transactions after school. We expanded our Wi-Fi 33 footprint and now it reaches all the main buildings and classrooms in the high school. Many access points and routers were installed to make this possible. Data projectors were installed and are in the process of being installed and the faster connectivity through Wi-Fi 33 enhances the educational experience of our high school students. Many of our high school students are from single parent homes or are orphans, especially in the hostels. Many of them do not have internet facilities at home. Access to the internet enables them to be ready for studies and workplaces where these skills are needed.“
In 2015 we made a grant to help equip two bedrooms in the new Alder Hey Hospital in Liverpool. This was the first project with the hospital and has led to a close and exciting relationship.
Jessica Carver-Wallis, Trusts and Foundations Partnerships Manager, sent this report.
“The two bedrooms on Ward 4B that Parry Family Charitable Foundation helped to equip are now are now being used to carry out “sleep studies” on children with respiratory and neurological conditions. These bedrooms are situated towards the far end of Ward 4B, ideally placed to provide a calmer and quieter setting at night. The progress is very encouraging.
Which patients might need a sleep study?
A variety of patients will need a sleep study because they struggle to breathe properly at night. These can include patients with craniofacial conditions, muscular atrophy and Duchenne’s, children who require extra ventilation at night, and children with Downs’ Syndrome and Trisomy 21.
What happens during a sleep study?
Taking place from six in the evening till seven the following morning, these sleep studies monitor children continuously overnight to establish and diagnose problems with breathing during sleep. A parent is able to stay over with each patient when they are taking part in a sleep study, on a parent bed (kindly supported by The Parry Family Charitable Foundation). This provides a great sense of comfort for both patients and their families, as the sleep study is a complex procedure. During a sleep study, patients are connected to a series of equipment that assesses and analyses how they sleep:
- 8 electrodes attached to their head look at brainwaves transmitted overnight
- 2 stickers over their eyes assess and track which stage of sleep they are in, for example Rapid Eye Movement (REM)
- Leads over their chest and brain map cardiac activity
- A sticker on one of their legs measures their CO2 intake
- Monitors around their face measure the CO2 intake from their nose and mouth
During the eleven hours they are on the ward, patients are monitored continuously by a specialist sleep study nurse and sleep study healthcare assistant, like Catherine Ball, pictured here. Catherine and her colleagues set the sleep study up and watch patients continuously on their sleep study cameras throughout the night. In the morning, the results of the sleep study are given to the Neurophysiology team to interpret, before being passed on to the patient’s Consultant to review and recommend new treatments or care pathways.
What progress have we made in the last three years?
Since having two dedicated bedrooms from which to deliver sleep studies, we have found this service to be incredibly well-used. There is currently a two year waiting list of children referred for a sleep study. At present, sleep studies are carried out three nights a week (Monday-Wednesday), however as a result of the success and popularity of this service, a business case has recently been approved to double the service to six nights a week. This will make a huge difference in our ability to see more patients who would greatly benefit from a sleep study.”
Institute in the Park is the dedicated international research centre in Liverpool focused on childhood illnesses with the aim of managing and understanding the diseases better. Back in 2016 we made a grant to purchase specialised laboratory equipment namely a ThermoFisher Scientific EVOS XL Cell Imaging System which is cutting edge microscope technology with wide application.
Dr Angela Midgley is at the centre of the research work and gave us this update about the Institute and some of their work that has benefited from the Imaging System.
“We have had substantial growth within our lab since we last met. A new Professor of children’s health, Christian Hedrich, has been appointed and his group has expanded quickly to include two postdocs and a technician. Prof Hedrich’s research interest is in childhood lupus but also respiratory illnesses and we are already benefitting from having new people to share ideas and collaborate with. Increased numbers, of course, brings an increase in demand for some of our equipment and also new needs.
Since receiving the EVOS cell imaging system in early 2017, the microscopes have become an essential and valued piece of equipment within our labs. In the proposal we put forward to the Foundation we outlined the experiments we would be able to perform using the imaging system and we are really delighted to report back that its application is as beneficial as we had hoped.
It has reduced the time needed to carry out routine checks on our cell cultures and has enabled us to carry out analysis that we were unable to do previously (an example of which is described later in this report).
In particular it has been fundamental in producing data looking at the development of kidney disease in children with Lupus called Lupus Nephritis. It has enabled us to take images of different kidney cells following incubation with proteins important in our body’s immune response and highlighted clearly how these proteins can altered the structure of the kidney cells and therefore negatively affect their function.
One of our PhD students was having difficulties using one of our standard techniques to show the activation of specific signalling pathways involved in inflammation in the kidney cells that she was working with. Understanding whether the kidney cells themselves were activated by these proteins would provide important evidence on the development of Lupus Nephritis.
Activation of the pathways we are interested in, involves the movement of signalling proteins from the body of the cell (cytoplasm) into the brain of the cell (the nucleus). Using the EVOS imaging system Vivian was able to stain her protein of interest and also different regions in the kidney cell.
The image shows that the nucleus of the cell is stained blue and the protein of interest green. In the untreated cells you can see that that one area of the cell is blue (nucleus) and outside of this the cell is green (signalling protein), however in the cells stimulated with proteins involved in inflammation, our protein of interest (stained green) moves into the nucleus (blue). This movement enables us to conclude that the kidney cells have been activated and therefore are involved in the body’s response and could
potentially be targeted therapeutically.
This data is due to be submitted as part of Vivian’s PhD thesis early next year and the images are also included in a manuscript that is currently under review for publication.”
Infosound is a small charity based in Brighton that provides an information service for vision-impaired people across the country. Operating from a small studio, its reach is vast and its services empower and reduce isolation for many people. The hub of their work is the audio studio which was old and becoming unreliable to the point that they faced the prospect of not being able to continue. We made two grants in 2017 and 2018 to fully re-equip the studio which not only secured their future but with the new technology opened up new ways of reaching their audience but also adding new services.
Rowland Myers, infosound’s managing editor, sent this very encouraging update.
“I am pleased to say that the equipment which your grants kindly funded has been in use just about every day since it was installed and, once a few early teething and compatibility problems were ironed out, it has proved just as reliable as we hoped it would.
With worries about equipment failure now behind us, I am pleased that I can now divert all my attention to the audio content production and distribution. Both our round-the-clock broadcast (“Infosound”) and its associated on-demand service (“Infosound Select”) can now be heard over any phone, on our web site, as a podcast, on various specialist audio players for vision-impaired people, on Twitter and, now, on the Amazon range of voice-activated devices – the Echo, the Echo Plus and the Echo Dot, for example. As you can imagine, for a blind or partially-sighted person, being able to just say to a mainstream device like this: “Alexa, ask My Talking Newspaper for Infosound” (that verbal instruction will change, but that is the current phrase) and getting straight though to listening to us is so simple and accessible.
We think it will revolutionise how we are heard and, in the new year, we may be looking to start ring-fenced fundraising to bulk-purchase Amazon Echo Dot players, so we can make these available (on free permanent loan) to blind and partially-sighted people who can’t hear us in any other way. This might particularly benefit the more elderly listener, who, of course by definition, will be more likely to be living with sight loss.
Other good news is that we have just attracted our 1000th follower on Twitter (where we distribute our audio features) and, significantly, we are now measuring over 3,000 daily activities to our service – that is, listening to our audio or actively using our web site (these are not web site “hits” which is a much higher – and largely meaningless – figure!)”
We are grateful for these updates, they make great reading! When we consider a grant application it has to stand on its merits. What we cannot be sure of is the outcomes and that is why updates are so important. It is clear that projects progress and mature often outreaching the original objectives which is very exciting. What also comes across is how important working together and building long term relationships with other charities and good causes are to delivering success. I hope you agree that our grants seem to have triggered more benefits than any of us could have expected. Long may this continue.
For a full list of main and small grants we have made since 2014 go to Grant Record.