One of our main aims as a patient group is to provide support to our PTEN community across the UK and Ireland in any way that we can, be it with in person patient days, information on our website or contact with professionals. As part of this aim, at the beginning of the year, we launched our ‘Cost of Living’ grant. This was a grant scheme devised to help our community through these current difficult times. Anyone affected by a PTEN gene mutation (a patient, parent or carer) was able to apply for a grant. They could apply across 5 categories – education (e.g. money towards a training course), equipment (e.g. iPads or OT, SLT, PT equipment for the home), mental health and wellbeing (e.g. days out for the family), essentials (e.g. items for the home such as washing machines, internet connection, paying the electric bill) or PTEN related costs (e.g. contributions towards expenses to get to/from medical appointments). Originally, we set aside 20 grants up to a maximum of £250 each. However, we had 28 applications in the end and instead of turning some people down, we contacted all applicants and agreed to fund all of their requests up to £150. Everyone in our community was in agreement as they wanted to help as many PTEN patients and families as possible. We didn’t want to turn down just 8 families!
All of the applicants were contacted and announced on 29th February 2024, the rarest day in the calendar, which happened to be Rare Disease Day 2024. The grants went towards family day trips and holidays, help with paying essential bills, parking and fuel costs to multiple medical appointments, a washing machine, freezer, bedroom furniture, a bike trailer, iPads, aqua yoga sessions and even a suit for a wedding! It was wonderful to see the support we could offer our community during this difficult time.
Some of our lucky recipients said:
“I have booked Center Parcs in Longford for a weekend Christmas break. My two boys have PTEN and several additional needs. So this grant has helped me book an adapted cabin to allow us to get away. We are really looking forward to this break as a family.” Louise Murray, PTEN parent
“Thank you so much for the grant money Harrison received from you. He used it to buy a suit for his cousin’s wedding … the wedding was lovely and Harrison really looked the part and he enjoyed the feeling of looking smart and it did wonders for his self-esteem. Here are a couple of pictures of Harrison in his suit with family members.” Paula Chiddle, PTEN parent
“Please find attached photos of the washing machine that was bought with part of your donation towards the cost of it . I’m very grateful and it is much appreciated.” Bhavna Chavda, PTEN parent.
“This grant means Samih can have his appointments a little bit more stress free as his iPad helps him remain calm and of course very happy thank you PTENUKI.” Rhea Carlin, PTEN parent.
“ We went to hall hill farm today and Lily had the most amazing time. Please find attached a few pictures from our visit. Thank you so much for the grant. Lily is already planning her next trip.” Donna Adams, PTEN parent
“Please see attached a photo of Freddie in his buggy which we bought using the money provided. This buggy had enabled us to go on days out and enjoy them as family. We have managed to go to National Trust properties and even Legoland. Without this buggy, these days out would have been really tricky and we wouldn’t have managed to be out all day or even been able to go at all. Thank you very much!” Caroline Day, PTEN parent
