CJD Awareness Day

Ribbon made by my Aunt Doreen :)

Today is National CJD Awareness Day. 

Those of us who have lost a loved one to CJD miss them every day, but today is a day when all of us who are missing that person (or people in some cases) can join together to honor the memory of our loved ones and advocate for global awareness and education.

CJD is a rapidly progressive, degenerative, always fatal brain disorder. It is a disease that our family saw firsthand when it took the life of my dad in September 2012. 

There are a lot of doctors around the world who have yet to see a case of CJD and some may never see it in their careers. This makes diagnosing someone with CJD even more difficult because they don't have prior experiences to utilize. CJD is often initially misdiagnosed and it may ultimately never be diagnosed if the doctors don't come to that conclusion before CJD takes the patient's life.

Some of the diseases that CJD can be misdiagnosed as are Alzheimer's, Parkinson's, ALS, and Huntington's, just to name a few. The symptoms of someone with CJD can be very similar to these diseases, but are typically more rapid in their progression. The similarities of these diseases can be a benefit, though, as research that is done on one of the diseases may help lead to a cure or treatment for one or several of the others. This is another reason that awareness is necessary - if those links between these "similar" disorders are known, researchers can work together toward the goal of eradicating all of these diseases.

As those of us who have been affected by this disease band together and make our voices louder, we can drum up support for awareness and research and, one day soon, a cure for this disease. A cure may start with a test to detect, in its early stages, that it is CJD the patient has, giving the family more time to become comfortable with what they're dealing with, it may be in the form of a way to treat or reverse the symptoms, or it may be the ability to pin-point what it is that triggers the symptoms. Any of these options would be such a positive step forward and it is these types of things the researchers we're funding are working toward with passion!

Last year at this time, our family was preparing for a large Birthday Bash Fundraiser in memory of my dad. We raised over $50,000 to help aid in research and help start a support program for those families who are affected by CJD. We funded two research grants through the CJD Foundation in my dad's name, and, this year, we hope to fund another! We are continuing to do what we can to spread awareness and help to fund the research that is vital in curing CJD by setting a goal to raise the $10,000 needed to fund another grant. Again this year, our $10,000 will be matched with another $30,000 from the CJD Foundation, making the grant equal a total of $40,000! We are hoping to do this with the help of our amazing family, friends, and community who made our event last year so successful, except, this year, they all get to help from the comfort of their own homes!

You can help us work toward curing CJD by clicking here and donating any amount you can that would go towards a research grant in my dad's name. 100% of what you donate will go to the research - none is taken out to go towards administrative expenses or anything of that nature. Last year we sold tshirts, served a great meal, raffled off prizes, carried out silent and live auctions, and collected free-will donations. Everyone went above and beyond to make the huge event a success, and we hope that you will help us make this effort a success as well with a cash donation!

Thank you so much for being a part of a cause that is so important to our family!

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.

Birthday Bash CJD Fundraiser in Memory of my Dad

Last Saturday was our Birthday Bash CJD Fundraiser in memory of my dad. It was one of the best and most amazing things that I have ever had a chance to be a part of. I have never felt so supported and loved and I am so grateful for those people who took the time out of their busy lives to come from near and far to support us!

The night never would have been as successful as it was if it wasn't for all of the time and effort that my mom and her absolutely amazing friends put in. Everything was just perfect!

From the beginning of all the planning, it just seemed like people have been coming out of the woodwork to volunteer their time or make a salad or serve food or donate money or donate an item to auction off... or to do all of the above. People are just amazing!

There were some absolutely awesome items donated to be auctioned off. It was hard to even choose the items that I would like to have for my own. A few of the items were just too great and I knew that they were going to bring more money than I could shell out, but I think that's a good problem to have!

Some of the items donated:

I am happy to say that one of the items I purchased was the one that I was determined to get.
It was this purple afghan:

First off, I think it is beautiful and, secondly, my hope is that some day, if God blesses me with a daughter, I will put it in her room and tell her all about her Grandpa and how that afghan was made in his honor for this big fundraiser we did in his memory. And then I'll tell her all about how amazing he was and about all the people who were there to show how much they love and miss him! 

(And if I only have sons, I'll just tell them all the good stuff but I won't make them have a purple afghan in their room (unless they want one)... and if I don't have any kids, I'll tell my nieces and nephews about him... you get the point)

I can't name them all, but here are some of my favorite parts of the night:

Seeing all the people who filled the Five Mile House all night

Having friends and family come from all over to support us!

Having everyone sing happy birthday to my mom before the live auction started!

 Having the first item on the live auction be a bouquet of purple irises which my mom was fully planning on buying. Someone outbid her, buying the bouquet for $500, which obviously bummed her out, but they immediately turned around and gave them to her. Definitely an awesome way to start the auction!

Having 12 dozen farm fresh eggs go for $50 a dozen!

Having these pictures of Ed Podolak that were signed over 40 years ago be sold for $1,800 and then were donated right back and sold again for $1,000.

 

Hearing people rave about the food and the salad bar!

Having the AWV girls' basketball team donate a signed basketball from state last year in honor of my dad, their coach!

And having my Grandpa buy it!

Having Doreen and Nick bid on several things they wanted from the live auction and being outbid for all of it and then watching them bid on some etched mugs and win them, only to find out they were bidding against Jared for a while and then, after he dropped out, they were bidding against no one... Dan (who was spotting bids) was just pretending that there was someone behind them bidding and bidding them up. (Okay, so maybe that wasn't a good thing for them, but it made me smile. They sure got some nice mugs, though!)

They still look pretty happy :)

Having items being donated for the live auction all the way up until the end of the auction! We started the day with 68 items or so, and ended up auctioning off at least 72!

Having my BFF be there! She is awesome!

Seeing the running total halfway through the live auction top $17,000 and then seeing our total with everything on Sunday exceed $45,000!!! (And see that total keep growing!)

Our total on Sunday, but more donations
have kept coming in since then!

Hearing Rukkus play! (even though they had to start over an hour late because we had so many auction items! Again, a good problem to have!)

A Templeton Rye toast to my dad happening in the basement.

Spending the night with these awesome people! They are just a small few of those that made this all possible!

And last but not least, remembering my dad throughout the night and seeing the evidence of how many lives he has touched.

I miss my dad so much and even though that event was in memory of him, it was still strange to think that he wasn't going to be there helping where he could, talking it up with all his friends and family that were there, and hearing him laugh and joke from across the room. I still thought that I'd turn around and he'd be standing there and I'd be able to walk up to him at the end of the night, slide into his one armed hug with my shoulder under his arm and just stand there, admiring all the work that had gone into putting on the event. An event that I know he would have been proud of!

I thank God for blessing us with the awesome family and friends that carried us through the preparations for the fundraiser and through the actual event. I completely give Him all the glory in this! Some people have made comments about how they don't know how my mom does this all or rave about how strong she is or they ask how our family can be so strong through this. I just read a devotional yesterday that I think answers it perfectly. The 10-day devotional is about giving thanks and this specific one basically says that no matter what is going on in our lives, no matter how uncertain it may seem, we have certainty in Jesus Christ. Our family knows that whatever comes our way and whatever the outcome of the season we're going through is, we will survive. We have a hope and a future. That is something to live for, something to be strong for, and something to look forward to! It's a lot easier to deal with everything in life when you know that you can lean on God and He will take care of you. We truly are blessed and are so grateful to bless others by giving them hope with the money that we raised that there will be a treatment or a cure for CJD. Not only that, but we can show them that we believe there is hope in Jesus Christ!

Thank you from the bottom of my heart to everyone who took the time out of their busy lives to be there in the weeks and days before to prepare and organize and set everything up. Thank you to everyone for using your gifts and talents to provide food for the event and items to be auctioned off. Thank you to those who were there on Saturday to support our cause and thank you to all those who have given generously in my dad's honor. This awesome night couldn't have happened without all the man power behind it! And like my mom stated in the paper, my dad was 100% right when he said "If it is to be, it's up to WE!"
Alone, we are rare, but together, we are strong!

Happy Birthday to my Mom!!

Today is the birthday of the most special lady in the world, my mother!

I always knew she was a superwoman, but more than ever in this past year, it has been undeniable. Regardless of how she’s feeling, she is always there for anyone who needs it, and she does it with a smile on her face. She is a shining example of someone who takes a bad situation and uses it for the good of others. Her faith in God is amazing as she leads us all in trusting God’s plan, even when we aren't sure what the end result will be. 

I am blessed to call this woman my mother! 

Even though there’s no way my mom is going to get much relaxing done on her birthday today as we prepare for the CJD Fundraiser tomorrow, there is no one that deserves a chance to take a day off more than her! I’m happy that I at least get to be with her on her birthday to help with the final preparations for what I know will be an amazing event tomorrow! If I had to guess, I would think that everyone’s generosity is a pretty good birthday present for her. 

I am so happy that I am able to experience so many fun things with my mom. They are truly memories that I will cherish forever!

Happy birthday to my Mommy!