CJD Family Conference in D.C.

Once again this year, my mom and I made the trip to Washington, D.C. to attend the CJD Foundation Family Conference. We left Omaha bright and early on Friday morning (I'm glad my mom was there to wake me up because I slept through my alarm!) and got to D.C. right at noon just in time to make it to the hotel for our first session, which started at 1.

We spent the afternoon and early evening in sessions and talking with other families at a social event. That first night we met a family who has lost over 10 family members to CJD over the last couple generations. They had 11 family members in attendance at this year's conference. It was great to see how they all handled having this genetic disease in their family and hear about the dynamics of their family with some of them knowing they carry the mutation for fCJD, some of them knowing that they don't have the mutation, and some of them still exploring whether they want to find out if they have it or not. No matter what each family member's situation was, they all supported each other and were set on finding a way to help those members of their family who may one day develop symptoms of the disease and to honor the memories of those that they had already lost to CJD. It is also interesting to see how, with the youngest generation, how the mindset has changed with family planning and the options that are available now that weren't there just 20 years ago. Options that are available and maybe just a change in mindset that will allow couples to grow their families without having to pass on this horrible disease to yet another generation.

We met people who had lost their husband/wife, son/daughter, mom/dad, or some other relative or friend to sporadic CJD and who were there to find out as much as they could and, most importantly, get the support from the hundred other people in attendance who are some of the small population of people in the world that know exactly what they have been through and can truly relate to them. 

After visiting for a while, my mom and I took off to get a bite to eat at a local restaurant and then walked to Capitol Hill to have a look around. We walked up the hill and could see the Capitol from the side and then walked around past the Supreme Court building and the Library of Congress. We then turned down the street in front of the Cannon, Longworth and Rayburn office buildings and down by the U.S. Botanic Garden before going back up to the stairs of the Capitol Building and taking some more pictures of the building. It was a beautiful night and we just sat there for a while with the Capitol in front of us and the Washington Monument to our backs. After we rested for a few minutes, we decided it was time to head back to our hotel for the night, but not before we stopped at the Capitol Reflecting Pool to take a few more pictures (at least as good of pictures as we could get in the dark). 

Our first view of the Capitol

The Supreme Court Building

Back at the Capitol

The Capitol from the other side of the Reflecting Pool

Saturday morning's schedule started with a memorial service in remembrance of all the loved ones of those in attendance who had passed away from CJD. Again this year, each time a loved one's name was read, a purple iris was put into a vase at the front of the room, and that's where it stayed for the remainder of the conference.

The rest of the day was filled with updates on research by people who have dedicated their lives to finding a cure for CJD and other similar diseases like Alzheimer's and Parkinson's disease. There was also time for us to sit and talk to those researchers and doctors in smaller groups and ask them whatever we wanted. 

My dad smiling down at us from up on the memory wall.

Saturday ended with a banquet, which included supper and a presentation by the President of the CJD Foundation, Florence Kranitz, who announced that she would be stepping down as President at the end of the year. As our family has seen first hand, Florence has been an invaluable asset to the foundation. She is always available to help and give advice and advocate for the families who are affected by CJD. She has gone above and beyond for us and many other families in our greatest time of need, during and after losing someone we love! She will definitely be missed.

During the banquet, we sat at a table with some members of the large family that I mentioned above. The woman I sat right next to was in her upper 60s and knows that she carries the genetic mutation for CJD. We had a great discussion about faith and how her having the mutation hasn't and doesn't change her outlook on life. It was just a great discussion. We both had very similar views on things and it was just such a positive and uplifting conversation.

On Sunday, the morning once again had presentations on research that is being done on CJD and other prion diseases. These presentations were done by people who have received research grants funded by families who have donated money in memory of their loved ones and the matching funds from the Foundation. Next year, there will be presentations on two grants with my dad's name on them which were funded using the money raised by our family and friends through our super successful fundraiser last November. And maybe, just maybe, it will the the money we all raised that will fund the research that will be the breakthrough needed to cure this disease!!

One of the last presentations was by Amanda Kalinsky, a member of the CJD Foundation board, and a carrier of the mutation for Gerstmann-Straussler-Scheinker (GSS) disease, another prion disease. (Her and her husband's story was shared earlier this year in the New York Times and on CBS This Morning.) Her dad passed away a few years ago from GSS and when she talked about him during her presentation and how this disease has affected her life, I don't think there was a dry eye in the room. The way she talked about her dad was exactly the way I feel about mine, which made it all the more emotional. She was one of the only speakers that talked about something so personal that hit home like that. She was also one of the few people who has seen their dad go through something very similar to what my dad went through and talk so publicly about it. It was just a very emotional presentation.

For us, the conference was over in the early afternoon. We left the hotel almost immediately and headed to the Metro station and to the National Mall. Our intended destination was the Korean Memorial. That required us to walk a half hour from the Metro station past the Washington Memorial and World War II Memorial, along the reflecting pool and to the Lincoln Memorial before we arrived at the Korean Memorial. Now that doesn't sound too bad except we were walking in the heat with our luggage and I was definitely not dressed for the occasion (talking jeans and a three-quarter length shirt). We were a sweaty mess by the time we got there... but we made it!

After we were finished at the Korean Memorial we had just enough time to get to the airport to get checked in for our flight. We made the decision to take a cab to the Metro Station, which we would ultimately take to the airport, rather than walk after our strenuous time getting walking to the memorial!

We had a great time in D.C. at the conference yet again this year. We met some more great people, got some great information and made some connections that we will utilize throughout the year as we try to do our part in finding a cure and helping others who are and will be affected by CJD in the future. The conference is definitely emotionally exhausting and trying to fit in seeing some sights while we're there is also physically exhausting, but it's worth it. The conference provides things for the families affected by CJD that we cannot get anywhere else. I'm very grateful for the opportunity to go and especially happy that I got to experience it again with my mom :)

Sidenote: Last year, a man by the name of Trevor Baierl was at the conference and he was in the process of making a documentary on CJD, his mother's battle with CJD and his journey to find out if he has the mutation for CJD. He was back at the conference this year and had his latest version of the documentary to hand out. He also has one of the latest versions on YouTube if anyone is interested in watching it. 

Click here to watch it on YouTube.