Our research
Supporting research that will help develop treatments for PHTS
We fund scientific and medical research that we hope will result in the development of treatment options for adults and children with PHTS within the next 10 years. The pursuit of this goal should also lead to improvements in the care of people with PHTS.
This is a significant task but we are not starting at the beginning. As well as being involved in PHTS, PTEN, and other genes like it, are often altered in cancers that spontaneously arise. Since the discovery of PTEN 20 years ago, scientists have gained a great deal of knowledge about how these genes work in cells and tissues, which is helpful for those researching PHTS.
As well as drawing on existing knowledge about how PTEN works, we can also draw on existing knowledge about PHTS. People directly affected by PHTS are experts on the condition and help us understand what would make the most difference to their lives.
Developing new medicines is a long and complicated process. It starts with research designed to understand exactly what causes the condition, so that medicine candidates which target the cause can be identified. It finishes with large scale clinical trials in people with the condition to show that a new medicine is effective and safe enough to be prescribed by doctors.
Find out more about how new medicines are developed here.
The research we fund covers this whole process. Supported projects include both the discovery of completely new potential medicines for PHTS, and finding out if existing medicines, already used to treat other conditions, might also help people with PHTS.
What types of research are funded?
Our current and planned research projects include:
These studies recruit volunteers with PHTS, and record both what happened in their past and then follow them up over time. The information collected is analysed to better understand how PHTS-related symptoms change over time in different people. These are sometimes described as natural history studies.
Find out here how one of our projects is studying cancer outcomes in a large group of people with PHTS
Find out here how another is studying people in the UK who have PHTS.
How are research projects chosen?
We invite researchers to send us proposals for PHTS research projects in two different ways:
- They can send us proposals that match up with one or more parts of our general research priorities, as outlined above.
- From time to time, we may request proposals on a specific research topic that we feel is important to prioritise. This second approach is referred to as “Targeted Calls”.
All research proposals are reviewed in detail by the Foundation, and in most cases by external experts in the field of the proposed research project. The proposals that are considered of outstanding value to the Foundation after this review are also evaluated by our Scientific Advisory Board, which includes experts in PHTS basic and clinical research, and in medicines development. Only the projects these experts feel meet our requirements will be recommended for funding. Ultimately, our Trustees, who are responsible for ensuring that PTEN Research charity funding is used responsibly, have the final say on what is funded and what is not.
Donate today and help us improve the lives of people with PHTS
All public donations are only used to fund medical research projects.
We use other funds to pay for the salaries and other operating costs of the Foundation.
If you would like to learn more about how your money is spent, we will keep you updated with our progress with our newsletter. Sign up to receive this here.
There are various ways to make a donation:
We are pleased to be working with KindLink as our online donation platform. Please click here to donate now.
PTEN Research is very grateful to all our donors, however big or small.
UK Fundraising
Introduction
Please bear in mind that this note is relevant only if you are fundraising in the UK. If you plan to fundraise outside the UK, you may need to comply with local laws relating to philanthropic fundraising, which can be a highly regulated activity.
Background
As a charitable organisation, our mission is to fund and facilitate research that will lead to better treatments and improved outcomes for PTEN hamartoma tumour syndrome (PHTS).
We are very grateful to anyone who volunteers to raise funds in the UK in aid of PTEN Research to help continue and accelerate our charitable mission.
Although at present PTEN Research has not engaged anyone to fundraise on our behalf, we would love to hear from you at contact@ptenresearch.com if you are planning, or have already staged, a fundraising event, however big or small.
Whether you are organising a run, bike ride, raffle, golf tournament, or coffee morning, please be aware of the following points, which are set out for your help and guidance.
The Code of Fundraising Practice ('The Code')
The Code is issued by the UK’s Fundraising Regulator, and states that:
- ‘In aid of’ fundraisers are responsible for organising all aspects of their fundraising. That means PTEN Research cannot accept any liability for your fundraising.
- ‘In aid of’ fundraisers must be sure to use the expression ‘in aid of’ PTEN Research in their fundraising. That makes it clear that you, not PTEN Research, are doing the fundraising.
Organising your event
- Before the event, please plan a budget, as we cannot be held responsible for any costs, taxes, or expenses incurred or arising in connection with your fundraising activity.
- Please don’t carry out any activity that could put PTEN Research’s reputation or name at risk.
Messaging
When fundraising in aid of PTEN Research, be sure to say how donors’ money will be spent, keeping our mission in mind, and using the following points as reference.
- As a registered charity, we will use donations to support our mission to fund and facilitate research that will lead to better treatments and improved outcomes for PTEN hamartoma tumour syndrome (PHTS).
- We do this by funding PHTS research projects and bringing together a global network of PHTS focused experts and other key participants.
Keeping your fundraising safe and legal
- Raising a collection can be a good way to fundraise. However, please get the right permissions and licences before raising public collections (usually from the local council or landowner). Please review the Chartered Institute of Fundraising’s guidelines for more information.
- Please take all reasonable precautions to ensure the wellbeing of your guests, for example, with respect to the venue you select, and any refreshments or entertainments you plan to provide, making sure you comply with regulations for health and safety, and food or drink.
- Please consider if any insurance is needed and ensure this is in place before any event, as PTEN Research’s insurance will not cover you.
- If you decide to organise a raffle, please bear in mind raffles are subject to gambling legislation. If you are planning to sell tickets over several days, you may need a licence. Check in with the Gambling Commission to make sure you are keeping within the rules.
What to do with donations collected
If you are handling offline sponsorship money or collections, please ensure that:
- Two trusted persons are present when accessing funds and counting.
- PTEN Research is advised once funds are sent by emailing contact@ptenresearch.org
- All funds collected are sent to PTEN Research within two weeks of receiving them, using the reference ‘Donations’, plus your name.
Getting your donations to us
- By online payment: Our preference would be for you to get the money to us online. If you chose this method, please donate via our KindLink page. All donations you receive will be processed and sent to us directly.
- By Post: Please send your money to PTEN Research by downloading our postal donation form. Please fill in your details and send the form back to us. If you decide to pay us by cheque, please attach your cheque with your name written on the back. Please note that we advise against sending cash in the post, and only recommend using postal donations if you are not able to make an electronic transfer which is much more secure.
- Gift Aid: If your donors are UK taxpayers, please ask them to declare Gift Aid. PTEN Research will then receive an extra 25p for every pound donated, at no extra cost to donors.