JENNIFER
Patient Advocate for Carney Complex, Patient Representative and amateur Artist.
Hi there!
If I had to describe myself I guess I’d say I am a creative, chaotically organized generalist! A jane-of-all-trades, if you will.
I love a good adventure! A notion instilled in me by my parents, who were brave enough to venture from the US to Switzerland. Both dabbled in art and encouraged me to draw and paint.
Had it not been for my mom, I probably never would have had the chance to have rats as pets. My first two girls, Xena and Ripley, came to me in a work colleague’s backpack. Their fur white as snow, eyes red as blood and tails (feet and noses) pink as the flower pedals of the Sakura tree. My 14 year old heart squEEAKed with excitement!
Life has held many surprises and challenges for me. So much so that over a decade ago I completely let go of creating art for myself. Only recently have I rediscovered that part of me.
And, I am calling it Rathattn.
MORE ABOUT ME
I am 1 in 10 Million to have been born with a genetic mutation on what researchers believe to be a tumor supressor gene. The rare condition I carry is called Carney Complex (CNC). CNC causes tumorous growths throughout the body. Predominantly affecting the heart, endocrine system and skin. Meriting me many a hospital visit and emergency surgeries.
I’VE ALWAYS BEEN VERY PASSIONATELY INVOLVED IN VOLUNTARY WORK.
Scouts
From age 12 all the way up to 27 I participated in swiss scouts. Even getting further education to become a scout leader and a federal youth and sports instructor specializing in camp sports and trekking. This allowed me to give 7–10 day courses and coach other scout troops.
Carney Complex Community
These past 11 years I’ve been deeply involved in voluntary work for the Carney Complex Community.
I am the founder of the Carney Complex Support Group on facebook, started the first Carney Complex Awareness Day back on April 24th 2016 and have continuously done so all the way up to 2021. I’ve designed the logos, done some video editing, written texts and have been working on the Carney Complex website as well as a personal blog.