When Dad was diagnosed with CJD the only thing even his specialty doctors could tell us was that it was rare and always fatal. We would ask questions and they would say they would try to find the answers. We felt like no one would tell us anything and we were in this perpetual cycle of uncertainty and always waiting. When I saw my PCP in July and we were updating my family history, I had to educate her. CJD wasn’t even a disease/illness option in their system to add to my file. 

Right after the diagnosis I started searching for people who had lived this. There are no in-person support groups because this disease is so rare (maybe 1000 cases in the U.S. each year). I found a wonderful CJD support group on Facebook based out of Australia - yes, on a different continent. So rare yet within moments of being welcomed into that group I found more people like me - not just countries, not just continents, not even hours but minutes, MINUTES! - away from Morgantown who had lost the people they love this relentless disease. They then introduced me to the only bright spot in this whole mess, the CJD Foundation in Akron, OH. 

One of the most unsettling answers we finally received from doctors was that it is possible my dad’s type of CJD is genetic, meaning Justin and I, his brothers, and even their children could find themselves up against this monster. Anxiously, I immediately called the CJD Foundation on a Saturday with questions on how to access genetic testing. Debbie anwered the phone and I was met with kindness, patience, and the most important thing to me at that time, knowledge. The one thing so many local medical professionals couldn’t give me. Debbie lost her husband to CJD. She knew the WV/PA families I met in the Australian FB group by name and even the woman who runs the FB group because she comes to the U.S. yearly for the CJD conference. My mind was blown! I learned so quickly that this community is a family. We talked for over 30 minutes about whatever I felt like and before we hung up she said, “Welcome to the club, I’m sorry you have to know us.”  I am so grateful for the Foundation.

Here’s how the CJD Foundation has helped our family in a just a few short weeks. 

1. THEY have quickly answered any and every question we’ve thrown at them. THEIR level of knowledge is outstanding! 
    
2. THEY are providing our family a brain autopsy to determine the type of CJD Dad had. If Dad's CJD is identified as genetic, THEY will cover genetic testing for us - all of this completely FREE OF CHARGE to us.
    
3. THEY contacted the funeral home to make same day transportation arrangements to and from Akron. THEY educated staff on our behalf (although, when I spoke to him before that, Jared at Fred L. Jenkins was impressively knowledgeable for only handling one other CJD case in 25 years). 
    
4. THEY were quick to provide and help with all the necessary paperwork. THEY made that process so incredibly easy and as comfortable as possible. 

And we're not special, THEY do it for all of us whose loved ones face CJD. So let me say it again, the CJD Foundation is AMAZING and if you’d like to support our family, please consider doing it by contributing to our fundraising efforts for the Foundation. We continue to stand Bill Kerns STRONG by working to help provide in order to lift up other families who are and will experience this nightmare.

Together we stand, together we stride! ?