This week’s blog was written by two members of our 2021-2023 Patient Group Engagement Committee! Get to know Christine Mutena and Michelle Conway now, and keep an eye out for more ‘Meet the Team’ blogs from our new committee members in the coming weeks.
Get to know Christine Mutena
Why/how did you become involved in rare diseases?
I have two daughters with different non-related rare conditions. Out of my quest for a local (rare diseases) support group, I stumbled on the campaign for EURORDIS’s Rare Disease Day (RDD) online. This was in January 2014, and as the saying goes, I have never looked back. Kenya has celebrated RDD since then, with each year getting bigger and bigger. Out of these events formed Rare Disorders Kenya, a patient-led organisation that creates awareness and amplifies the profile of rare diseases in Kenya.
Why did you choose to join our Patient Group Engagement Committee?
The world is but a global village and there is no need to reinvent the wheel, hence it would be great to share knowledge across the different continents.
I chose to join PGEC so as to gain knowledge on how to better our local patient advocacy group, but most importantly to share information while putting the Kenyan community on the global map.
What do you enjoy doing in your spare time?
What is spare time ?
Favourite book/movie/tv show? And why?
My favourite shows are actually on the opposite end of the spectrum. I do love indulging in some Criminal Minds, as well as a good animation movie.
Criminal Minds I guess is quite intriguing (and scary) but it is very interesting trying to solve the crime and get who the unsub is. On the other hand, cartoons are good for the soul (and also help relax the mind after a scary episode of CM).
Get to know Michelle Conway
Why/how did you become involved in rare diseases?
My interest in rare diseases was sparked when I started to work for a biotech company who were launching a new innovative medicine for the treatment of an ultra-rare condition. I was very quickly appalled by the lack of understanding and support patients with rare diseases experienced on a daily basis when trying to seek care and treatment. This was compounded further when a friend from university had a little boy who was born with an ultra-rare condition where there was no treatment. Her fight to raise funds in order to support ongoing research that could offer hope to her little boy and many others was truly inspiring and made me realise that I wanted to fight for the people who have a daily fight, often to receive the most basic of care!
Why did you choose to join our Patient Group Engagement Committee?
I have attended several Findacure events over the years and have always been very impressed with how patient focused the events are and with the strong links the organisation has with patients and patient groups, looking to create solutions!
What do you enjoy doing in your spare time?
I love hill walking, paddle boarding, baking, dancing and spending time with my husband, two children and new puppy!
Favourite book/movie/tv show? And why?
Any US political dramas- I am fascinated by the American Political System
Crime novels -I love guessing what the twist might be in the book!
Keep an eye out for upcoming blogs that’ll introduce you to the members of our 2021-2023 Patient Group Engagement Committee. Next up will be Tony Thornburn’s ‘Meet the Team’ blog!