How the Carney Complex Community began

During Jennifer‘s first visit to the NIH in 2004 she had asked Dr. C. Stratakis if there was a patient group for Carney Complex, he answered: ‘Not yet. But maybe you could start one?’

At the time she was 19 and didn‘t really see any sense to it or way to go about it. Things took a turn when her medical history started differentiating from the rest of her family‘s. She really struggled and felt like she didn‘t have anyone to talk to or who understood her.

In 2007 atempts to look for people nationally didn‘t merit any results. Three years later Switzerland hosted its first Rare Disease Day Event and she decided to go.

Whilst listening enviously to others talking about their diseases together I remembered Dr. Stratakis’s comment and felt inspired to go ahead and start a group for myself and the other Carney Complex patients out there.
I was convinced there must be others feeling the same way as I did.

In the summer of 2011 she visitied family in the US and got to meet and catch up with her cousin, Ben Jackson. Ben had been suffering from early-onset Parkinson’s and was a fierce advocat for the Wilkings Parkinson’s Foundadion. ‘Ben encouraged me to think about starting a website for Carney Complex and was just an incredible source for information. Over night he had registered a domain for the Carney Complex Community and surprised me with it the next day.’

gif by Jennifer

  • The desire to connect and break the isolation were the pot and seed

  • That short interaction between Dr. Stratakis and me added the soil

  • Attending the Rare Disease Day Event ended up being the fertilizer

  • And my cousin Ben’s encouragement the water to finally let that seed grow.

February 21st 2011 was the year Jennifer decided to start a support group on Facebook ‘Carney Complex Community (international, English)‘ and break the isolation. At first it was a small group but over the years it’s grown and members have joined from all over the world.

She also set up the ‘Carney Complex Awareness Page’ and started to work on the ‘Carney Complex website’ with the hope that anyone looking for information on Carney Complex would find the Community and be spared having to invest so much time gathering helpful information.