HELP US

to Support the

PSP Association

About PSP, CBD and the PSP Association

Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are rare neurological conditions caused by damaged brain cells, affecting balance, movement, mobility, muscle stiffness, speech, memory and swallowing. PSP carry additional symptoms and people may also experience changes in behaviour and vision. Due to difficulty in swallowing, some patients will require a feeding tube or Percutaneous Endoscopic Gastrostomy (PEG) to avoid malnutrition, dehydration and risk of choking or inhalation of food leading to pneumonia, which can be life threatening. These life limiting conditions usually develop in adults between the ages of 50-70, in some cases much earlier than this, and are commonly misdiagnosed as Parkinson’s Disease. While physiotherapy, occupational therapy, speech & language therapy can assist patients in their day to day life, these conditions are degenerative and can only get worse over time. The rate of deterioration varies between individuals with an average life expectancy of 6-8 years from the onset of symptoms. This number is variable and may be much lower as a result of complications. At present, there is no cure or treatment.

The PSP Association (PSPA) are a charity supporting people with PSP and the only charity in the UK supporting people with CBD. Donations make it possible to provide invaluable information booklets, local support groups and confidential helplines for emotional and practical support. Services are also accessible to carers, family members as well as health care professionals. Donations are integral to funding vital research to help improve the lives of those affected with the aim of finding life changing treatments and an eventual cure.

Find out more at www.pspassociation.org.uk

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Make a direct donation via the PSPA website or see below for our fundraiser

Why Are We Involved?

“This is something that is very close to my heart. My mum had her first symptoms of CBD and PSP almost 3 years ago. It started with weakness in her right hand and eventually spreading to her leg and through to the rest of her body resulting in frequent falls and slowness in movement. We went through a lot of frustration and uncertainty as a diagnosis was not made until almost 2 years later when her condition had deteriorated drastically and she was admitted into hospital. She’d lost a lot of weight, lost all her strength, her mobility, the ability to eat and was left unable to communicate properly. She went from being completely independent to needing 24 hour care. Due to complications with her breathing, she sadly passed away just one short year after her diagnosis and at the start of the UK’s Covid-19 lockdown.

These debilitating conditions can strip away the ability of performing the most basic of tasks that most of us take for granted such as feeding oneself, sitting up and getting dressed. Not only is this an emotional and physical challenge for the people suffering and their families who care for them but it also has huge financial implications. I hope that one day more people will be aware of these illnesses and a cure will be found so that families no longer have to endure these difficult times” - Isabel Wong

Our Objective

This page was set up at the beginning of the Covid-19 pandemic and we wanted to do our part in supporting the vulnerable and our healthcare providers whilst also raising funds for a good cause. Charities like the PSPA have been heavily impacted as a result of the health crisis and are in need of funding to be able to continue providing assistance and resources to those affected as well as vital research. We are making basic cotton face masks/coverings that are suitable for personal use by the general public so that medical-grade masks that are in short supply can be reserved only for the most critical healthcare workers on the front line. As we have the resources available, we want to put them to good use and assist in any way we can.

How You Can Help

To make a donation, you can do any of the following options:

• Make a donation via our donate button. You can choose to simply donate, receive one of our re-usable face masks and/or pattern (so you can make your own) or nominate a recipient if there is someone you would like to gift it to.

• Make a purchase of any product via our online store and tick the checkbox at checkout to donate 5% of your purchase value to the charity.

• Donate directly to the charity by visiting → www.pspassociation.org.uk

HOW TO MAKE A FACE MASK →

Our face mask pattern is available to download for free (in the link above) however, a small donation towards our cause would be greatly appreciated!

UPDATE
From March - June 2020, I have dedicated my time making and donating scrubs to the NHS, providing masks for the vulnerable and donating 100% of profits raised from the sale of these masks to the PSPA. THANK YOU to all who have made a contribution so far bringing the total raised to £1236 as of 26th June 2020!

Our Face Masks / Coverings

All our face masks are professionally handmade and produced in our studio. Made from 3 layers of high quality 100% cotton to ensure they are as breathable as possible. Every mask features a filter pocket where a filter can be inserted should you wish to use one (filter not included). Ear straps are made from soft knit elastic cord for a firm but comfortable fit. We are constantly adapting our design to ensure we can offer the best universal fit so please be aware the masks we send out may vary slightly. Please note that our face masks are not medical grade and act only as a preventative measure which is better than nothing at all. We recommend face masks are washed before the first use and after each use so that any potential contaminants are eliminated.
Masks are non returnable due to hygiene reasons.

DISCLAIMER
Our face masks/coverings are not intended for use as a replacement for Personal Protective Equipment (PPE) and are not a licensed product or approved for use in clinical/hospital settings. If in doubt or in circumstances where PPE use is required, you should consult a healthcare professional or your healthcare management/trust for guidance. Our masks have not undergone any regulatory product testing and are not proven against the spread of viruses nor claims to have any protective guarantees or health benefits. These masks are designed to be used by the general public as a precautionary measure and in conjunction with social distancing and personal hygiene practices such as regular hand washing and refraining from face-touching, as recommended under UK government guidelines. Use masks with caution and avoid use under strenuous physical activity, for prolonged periods of time or where breathing is restricted. Should you experience any breathing difficulties whilst using our face coverings, please remove immediately. If you have pre-existing health or respiratory conditions, please consult a healthcare professional for advice before using. Our masks are for adult use only - Infants and young children should not use our masks and should be supervised at all times. Face masks should be washed between 40-60°C before first use and after every use. The decision to use these masks is solely your own and at your own risk. We cannot accept any liability in the case of accidents, injuries or health complications as a result of using them. Please also note that our fundraiser is not sponsored, endorsed nor affiliated with the PSPA in any way other than being the chosen recipient of the charitable donations raised by our initiative. The PSPA are not involved in the making, supply or distribution of our masks and cannot be held accountable in the case of accidents, injuries or health complications as a result of using these masks. 

For more information and advice, please refer to Public Health England→