A few weeks back, my mom and I took a trip to Washington D.C. to attend the CJD Foundation Family Conference that has been an annual event for the past 11 years.
We boarded our plane in Omaha around 5:30 on Friday morning and we were on our way. We got to D.C. around 11:30, ate some lunch at the airport, and then made our to our hotel. The conference was taking place at the hotel where we were staying,
The Washington Court Hotel.
When we made it to the hotel, we dropped our bags off at the front door and headed right to our first session. The first two sessions we went to were some of my favorites because they were the most interactive. There were some short presentations by some "experts" at the beginning of the sessions and then there were some question and answer sessions. We had the opportunity to ask questions to some of the doctors and other professionals who were there and also ask questions to other family members who have been dealing with the affects of CJD for longer than the short nine months since we first heard about and were affected by the disease. And as sad as it was at times, I loved the openness of all the attendees there who were willing to share their stories and how CJD had affected their families. What stuck out to me was all the positive people there who weren't going to let CJD overtake their lives and were there to share what they have learned through their grief and how they have continued to honor their loved ones through their own lives. Everyone there was truly there to support each other, as no one else can really understand what this disease does to a family until you've been through it. And all of us have been through it!
After the first sessions, there was a short break where we were able to check into our room and then headed back downstairs to a Welcome Reception. We were able to mingle and talk with others one-on-one at this point. We met some people who's names we recognized through the CJD Family Facebook and met a handful of ladies who turned out to be our "tablemates" for the rest of the weekend.
At the end of the welcome reception, we took the few hours we had before dark to go do some sight seeing. This was my first time in D.C., so I was anxious to be able to see all that we could. We took a taxi to the Lincoln Memorial and then began walking our way back towards our hotel (towards the Capitol), past the Vietnam Veterans' Memorial and the WWII Memorial and then up by the White House.
The Lincoln Memorial
The Washington Monument and Lincoln Memorial from the middle of the reflecting pool
Vietnam Veterans Memorial
We found the name of Eugene Kock on the wall
The National World War II Memorial
And of course, we were Reading it Everywhere while we were sightseeing!
After walking down to the Washington Monument, we turned to head up towards the White House.
Right after taking that picture, my phone died, so we didn't get to "Read It" in front of the White house or get our picture taken together in front of it or anything, but I guess we'll have to do that next time! It didn't take us long after walking around a bit to decide that we had to come back again to really take in the sights and explore some more. We just didn't have enough time do everything we should!
After we left the White House, we walked the three blocks to the Union Pacific D.C. office just to see what it looked like. My co-worker called me a nerd when I told her that I was going to go past there, but it just seemed like the perfect thing to do since I was right there anyway!
We then made our way to the nearest Metro station and went back to the hotel to call it a night. Neither one of us brought proper walking shoes since we didn't have a ton of room in our carry-on luggage, so our feet were pretty sore by the time we were done for the night! We'll bring better walking shoes next time we go, too!
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| On the Metro |
Bright and early on Saturday morning, it was time for the conference to start up again. To start off the day, there was a memorial service in honor of all the family members of the conference attendees who had passed away from CJD. There were a few readings and then they read the names of each loved one and put a purple iris in a vase for each one. It was a very nice symbol to have at the front of the conference room through the weekend.
Each person attending the conference could also bring a picture of their loved one to have placed on the Memory Wall at the front of the conference room. We brought our family picture that was taken in November of 2010 and the picture of my dad when he was smiling big while walking out of the tunnel at the Girls Basketball State Tournament in 2011 to put up on the wall.
The rest of the day on Saturday was filled with presentations by a lot of doctors giving updates on their progress in studying to find new ways to track, cure and figure out CJD. A lot of the information was very complex and I'm not sure I understood all of what they were saying, but it was comforting to know that there are some very smart people out there who are working hard to find out all they can about this disease. The last presentation of the day was done by Dr. Gambetti from the National Prion Disease Pathology Surveillance Center. He gave an update on statistics of the disease that were gathered from questionnaires the families fill out after a loved one passes away from CJD. It was quite interesting to see the numbers and the trends they are trying to track. The report also made it evident that there is a great need for awareness about the disease so families who are affected by CJD know the importance of having an autopsy done on their loved one and filling out that questionnaire. They are both small steps that can be taken to help those who are working hard to research and determine if there are any trends that go along with the disease so they can make strides to figure out all the complexities of CJD.
On Saturday night, we all gathered again for a nice banquet meal. We had some good conversation and a presentation by the CJD Foundation President Florence Kranitz.
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| More purple irises for centerpieces. |
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| New friends |
We sat at a table for the weekend with two other women who, like my mom, had lost their husbands to CJD. The most bizarre thing about the whole situation was that all three of their husbands had passed away last September within six days of each other. That just accentuated the fact that, at this conference, there are so many people who know what you have gone through more than anyone else out there and, in this case, there are others who were going through the same thing at the same exact time.
On Sunday, there were some more presentations, including some by people who were given research grants by the CJD Foundation to do their work.
After the presentations, those that were staying until Monday and going to Capitol Hill to advocate to their respective representatives to not reduce greatly the amount of funding that goes toward prion disease research stayed to do some advocacy training. I then went up to our hotel room to pack to head home because I had to get home so I could go to work the next day.
When the training was over, my mom along with some of her new friends were going to go to Arlington Cemetery to see the Changing of the Guard, so I rode the Metro with them until my stop that I needed to go to the airport. I was glad I was able to leave her in good hands so she wasn't all alone in the big city! :)
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| All those that were going to Arlington Cemetery waiting for the train. |
All in all, it was a whirlwind of a trip: we met a lot of people, were introduced to a lot of new things, learned new things, cried, saw some cool historical things, ate some good food and got to hear a lot about what people are doing to find a cure for CJD.
During the the conference, the quote below was shown and it instantly became a new favorite of mine.
I love it because it is so true. Everyone has their own talents and passions, but everyone has the ability to make a positive impact on the world. I strongly believe that everything happens for a reason. God doesn't make mistakes. We don't have to understand why things happen, we just have to trust that He is in control and do the best we can.
Think about it this way: sometimes the best people (my dad and my family) are affected by the worst things (CJD) so those people and those surrounding them (our family, friends, and community) can be the people who use the situation for good, shining their light in the world. Whether it's using our resources to raise money for the CJD Foundation and help to find a cure so other families can be spared the pain that is caused by it; using our experience with grief to help others who are going through the same thing, showing them that it is possible to get through it; using our voices to spread awareness of CJD, so other families know that they are facing a CJD diagnosis as early as possible and can cherish the times they have with their loved ones; or just by continuing to be positive people, trusting God and praising Him through this all!
I think that sometimes I'm the candle and sometimes I'm the mirror, but I know that this little light of mine, I'm gonna let it shine!!
