Are you someone living with rare cancer, or a carer of someone who is?
Are you interested in shaping and improving information and support for people living and working with rare cancer?
Then get in touch by the 1st June 2018 by emailing Julie McMullan firstname.lastname@example.org
Queens University Belfast would value your input and expertise, in shaping and developing their research project. At this stage they only need your permission to be named as an individual involved in the proposal, as we are currently at the initial stages of seeking funding for the research.
If successful in reaching the next stage of the application, Queens University will be in touch to invite you to share your input in co-developing the content and enhance the research design, to help make the project more worthwhile and effective in addressing needs and disseminate findings in a way that is of greatest benefit to you.
Your views matter so please get in touch to make your opinions count.
The project is funded by McMillian Cancer Support, and the details of the scheme can be found via the link below:
Susie Rea, one of the recent winners at our poster competition, held during the March conference, is reaching out for participants who can help her with her photography work as part of her PhD studies.
Her focus is on those impacted by Advanced Reproductive Technologies.
We were keen to interview Susie to find out a little more about her, her studies and her work.
To find out how you can get involved in this fantastic project, read on!
Tell us a bit about yourself:
I am a photographic artist and PhD researcher at Ulster University in Belfast. My work explores the fault lines where medicine, technology and society meet.
What is the study about?
Advanced reproductive technologies (ART) present ordinary families living with genetic disease or disability with some of the most challenging decisions gripping society today. I am interested in the complexities of these decisions. To understand them, you must try to walk in someone else’s shoes, and think about their lives and their choices. The challenge of this project for me as an artist, is to create a series of photographic portraits that communicate some of these difficult issues to the viewer through the medium of the family photograph.
Who can take part?
The project will involve finding, photographing and interviewing ten families. The families who participate will all have dealt with these challenging decisions. They will be willing to discuss the decisions they have made publicly and will be comfortable with having a visual representation of themselves disseminated in the public domain. Some families will have actively chosen to use ART and others will, after consideration, have opted not to. The project is about both of these choices, the reasons for them, and the path eventually taken.
The term assisted reproductive technologies or ART refers to in-vitro fertilisation techniques such as pre-implantation genetic diagnosis (PGD) and pre-implantation tissue typing (PTT). The project is focused, in the main, on these new cutting-edge biotechnologies. However, prenatal diagnosis (PND) and chorionic villus sampling (CVS) are techniques that some families have opted to use instead of ART, as a result of their specific circumstances, and these families will also be considered eligible for the project.
What’s involved in taking part?
Participation is entirely voluntary. If you decide you would like to take part, every member of your family will be provided with a detailed information sheet and will be asked to sign a photographic and audio release form. It will be the responsibility of one parent/guardian of any children under 18 years of age, or vulnerable adult participants to give consent. If you agree to take part, I will arrange to meet, or speak with you, in advance of the photographic and audio interview session to introduce myself. This will be an opportunity for me to take you through the details of the project and talk through the consent to ensure that you understand what participation in the project entails. We will then organise a mutually convenient time for me to visit you at your home. The photographic session and interview will take approximately three hours and the format of the photograph will be a conventional family portrait. I want you to be yourselves, so there will be no need to dress up or tidy up!
Are there any risks?
The study involves a photographic shoot and interview session, so the risks in participation are minimal.
Who will benefit?
The artworks that will be produced from these sessions will be used for research and exhibition purposes. The consent form for the images and the audio interviews will therefore cover multiple media platforms. It is hoped that the exhibition will raise a positive discussion in the public domain about ART, families living with genetic disease, and the societal impact of these new technologies.
This research is part of a PhD which is funded by the Department for the Economy (DfE) and is being conducted on behalf of Ulster University. The study has been reviewed by the Ethics Committee at Ulster University in accordance with the University’s guidelines.
How do I find out more?
The Foyle and NW forum (NIRDP) meeting took place on Saturday 19th May and it was great to welcome old and new faces to the group. There was lively discussion about issues affecting those with rare diseases with particular reference to:
- Support for carers available via the health and social care trusts
- Importance of raising the profile of rare disease by telling our stories – thanks to Anita McDowell for allowing her story to be shared via the Derry Journal. Attendees were encouraged to utilise 10,000 more voices initiative to share their patient experience
- Courses offered by recovery colleges and how to influence their prospectus
- Challenges associated with travelling outside NI for medical appointments
- Challenges for children and parents accessing appropriate educational support with rare conditions. Signposting to SENAC is advised but need to be aware the service is in high demand and early intervention is important .
- Education Authorities are working under tight budgetary constraints and access to Statutory Assessment and the Statementing process and subsequent provision of support can be delayed.
We look forward to hearing more about the potential for an EDS and associated conditions conference that is being proposed by EDS UK with support from NIRDP.
The group will continue to meet quarterly, next meeting will be planned for September with details to follow.