Weekend in St. Louis

A few weekends ago, Trent and I took a little mini vacation to St. Louis. We left in the morning on Saturday and by Sunday night we were back home in our own beds. 

We stayed at at the Magnolia hotel downtown, it was newly renovated and opened just a few months ago. It was a nice place to stay. It was definitely an older building that they repainted and "dressed up" to make it look more modern. 

Right after we got there, we hung out for a while and then headed down to happy hour at the hotel bar. They have a managers reception, so we enjoyed a few free drinks before heading out for the evening.

Our first stop was the Gateway Arch. We wanted to go up inside of it, but, by the time we got there, it was closed, so we didn't get to experience that together. 

We made up for not being able to go up inside the top of the arch by taking a helicopter tour that took off from the base of the arch instead! Neither one of us had ever been in a helicopter before, so it was pretty cool to experience that together. It was like our own personal Bachelorette experience!

We didn't have quite as many options for tour routes because there was a Cardinals game going on nearby and that made the air space around the stadium restricted. So we took the Anheuser-Bucsh Tour that went down the river and over the Brewery then it crossed the river and back to where we started while giving us a great view of the St. Louis skyline.

It went by really fast, but it was so much fun. Here's the video I took while we were up in the air. I sped it up so the shakiness is really accentuated... So if you get sick easily, you might not want to watch this!! I wasn't really paying attention to what I was videoing because I was just holding it up while I was looking around, so don't expect too much from it :) It's nice a nice video to have, though!

After our helicopter tour, we tried to get some pictures of us with the arch in the background, but the random person who took our picture wasn't the greatest photographer... so this is what we've got to work with...

Thanks to Aunt Doreen, we did get one with the arch, though!! :) I love this one!

And we got this one we took ourselves... 

After we were done at the arch, we walked to a restaurant called Sauce on the Side. They serve a wide variety of different calzones and they were pretty great! I'm very glad that we found that place. After supper, we swung by a Bella's Frozen Yogurt for some dessert and then headed back to the hotel to watch some football before bed.

Sunday morning, we had breakfast at the hotel and then headed to the Edward Jones Dome for the Rams vs Cowboys game. We had tickets in the front row, 5 yard line. They weren't the best seats for seeing all the action on the whole field, but, for my first NFL game, it was definitely a great experience to be that close to the field and see all that was going on along the sidelines. Next game I think we'll shoot for 50 yard line and a few rows higher ;)

There were a few good plays that happened right in front of us which was really cool, and it was a really good game that ended up being pretty close. It was just a really fun time!

My videos from the game.

After the game, we were right back on the road and headed towards home. It was a really fast trip, but we packed a lot of fun stuff into the 36 hours we were gone. It really makes me look forward to the next trip that we will take! Hopefully it's a tad bit longer, though :)

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.

CJD Family Conference in Washington D.C.

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!

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.



More purple irises for centerpieces.

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! :)

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!!