a. Support
Caring Matters Now is a registered charity and support group specifically for people with CMN and their families. Our 3 main aims are:
- We support those affected by CMN
- We fund pioneering research to develop effective treatments for CMN
- We raise global awareness of CMN
Support is provided following our child to adult Support Pathway. We have a dedicated Support line, FREE Support Literature, a trained Peer Support Team, as well as hosting ‘In-Person’ support events and Online Communities. We also invite our members to join our closed Facebook groups which give the opportunity to chat, share experiences and seek advice from our team and from other people effected by CMN.
Through each of these platforms, we raise awareness of CMN as a rare condition and spread the news of the research findings and developments. Over the years we have contributed significant funding to the research into CMN at Great Ormond Street Hospital in London. Annually our members have the opportunity to join a Research Presentation with Prof. Kinsler which includes a Q&A session.
You can receive research updates by:
- Attending the adult gatherings and annual conference
- Receiving our annual news magazine INSPIRE, which includes a written annual research review
- Browsing through the Research section on our website, which includes links to medical papers and updates- Please note that due to the continuing advancement in CMN research, it is important to seek current guidance and advice by contacting Caring Matters Now.
Seeking medical advice: We signpost our adult members to Professor Pierre Vabres at the Rare Disease Collaborative Network (RDCN) Adult CMN Clinic in St Thomas’ hospital. The clinic provides diagnosis and care for adults with mosaic disorders including congenital naevi. This is a fantastic new development to our Support Pathway meaning that our adult members can access care for new problems with their CMN or have the genetics of their CMN tested.
As a charity, we strive to raise awareness within and to educate Medical Professionals, if you need support in accessing medical care with a clinician who has knowledge of CMN, please reach out to us.
Partnerships: We work in close partnership with researchers from the Centre for Appearance Research (CAR) UWE, the VCTC Foundation- a charitable foundation working to improve the lives of those living with a visible difference through funding a a wide range of basic science, clinical research and service provision and the Appearance Collective to improve the quality of life for our members by better understanding the psychological impact of living with a visible difference as well as the best possible methods of intervention. More recently we have joined the alliance of Face Equality International, read more here.
For details about any of the above opportunities please email support@caringmattersnow.co.uk.
b. Can I receive DLA to support my CMN diagnosis?
Parents of children with extensive CMN or NCM may be eligible for Disability Allowance, but in general this is only for children with neurological problems or melanoma. If you would like further advice, contact your Citizen’s Advice Bureau or the Social Services Department in any hospital your child visits. Alternatively, there is more information at www.gov.uk.
You can watch several ‘Ask the Expert’ sessions with Professor Kinsler on our website.
c. What happens in Prof Kinsler’s lab?
In our lab we are using as many different approaches as we can. The reason for this is that this is a tough problem, so we need to really do this properly, scientifically and come at it from every single angle we can.
Secondly, we know that some of the problems are going to be difficult in finding a treatment for CMN, but there will be ways that we simply have not imagined yet. Our approach is to really attack it from all different angles in terms of genetic treatments and drug treatments. The same applies for other teams that are trying to look at this as well, people are trying to use everything that might be available now. It may be that we find treatments which are effective but are not safe, that’s a real possibility. We also might find treatments which are safe but don’t work very well, so we are having to try different approaches at the moment to find something that works and is safe.
d. What is a clinical trial?
A clinical trial is a research study that tests new treatments in people who volunteer to take part. Any potential, new treatment must be approved for use through a clinical trial, the results of the clinical trial must show that a treatment is safe and works well. Only then can it be approved for use by the public. Most new treatments go through 4 phases of clinical trials, each phase has different goals, and the treatment can only continue to the next phase if results show that it is safe and it works.
The most important thing to researchers is participant safety, therefore clinical trials are designed so that the possible benefits outweigh the risks. For example, the number of participants that take part in trials increases over time, researchers only give it to more people if it is safe and it works.
Here is a helpful video: The Four Phases of Clinical Trials | Diversity in Clinical Trials | AKF
