Charmaine Chantler is a Regional Volunteer for the Association for Multiple Endocrine Neoplasia Disorders (AMEND), UK and a participant in the INCA Boot Camp for Research Patient Advocates.
Why did you enroll in the INCA Boot Camp, Charmaine?
In 2016 I was diagnosed with MEN1 after being very unwell for quite some time. I was supported greatly by AMEND during this period of uncertainty. After I had dealt with the initial diagnosis and my first surgeries and treatments, I decided to volunteer for AMEND with the hope of giving some of the (very much appreciated) support back to fellow patients. I host regional peer meet ups (pre COVID) and regular online zoom meetings where patients can get together and share experiences. I have learned so much from other patients through this as well as through connecting with other patients on social media. It gives me a good sense of their needs and what is truly important to them as well as the struggles they have in receiving the appropriate treatments and investigations. It is my hope that I will be able to carry forward the knowledge that I gain through the INCA bootcamp to assist patients further with the work I do with AMEND.
Who do you perceive to be your partner in this effort to promote active patient involvement in NET research?
AMEND. This boot camp is providing me with a greater understanding of the many things that go on ‘in the background’ as well as where to find resources and trusted information and I have found it very useful so far. I am extremely appreciative of AMEND and very thankful to have been given the opportunity to be a part of this amazing course.
The most important thing you learned from the webinar this month?
How to read medical literature and statistics. It really isn’t as straight forward as it seems and the most valuable lesson, I took away from this is to always look at the bigger picture. I am very much looking forward to what’s to come in the next few months of this course!