Going the Distance….
My sister and I flew out to Washington D.C. for ALS National
Advocacy Days on May 11th and the second we arrived we dropped our
bags and started sight-seeing! We spent our entire afternoon looking at
monuments and it was amazing! Then, my family that lives in D.C. picked us up
and we went to their house and grilled out; it was a blast! I got to meet my
baby cousin for the first time, which was a blessing. On Saturday, we continued
to sight-see with my family and they took us to see the Discovery space shuttle
and to our first vineyard. It was another beautiful day full of memories! Before
my sister and I went to bed, we checked out the National ALS Facebook page.
They posted a picture of me and had a little bio of me. So many people from
all over the United States commented on my photo and thanked me for what I was
doing. It was such a touching experience for me, because I didn’t know one person
that thanked me.
Sunday was the day that ALS National Advocacy Days started. I
got to speak at the opening ceremony and share a little bit about mine and my
mom’s story. Once the opening ceremony was over, there were so many people that
came up to me. It was amazing listening to everyone’s story. We then had a
candle lighting ceremony in honor and remembrance of everyone who has or had
ALS. It was a very emotional time for me and my sister. I think that it is hard
to try to explain to someone what we have gone through, but everyone at that
ceremony knew exactly what we were feeling.
Monday was a very long and exciting day for my sister and I.
All day we sat and listened to the lead researches and doctors that are working
with ALS. We learned so much, more than we could have ever imagined. I got to
meet a lot of people that are on the National ALS board and it was a great
experience. Each of them was so grateful for what I was doing. It was a very
long day, but I got so much insight to what was happening in the ALS community
across the United States, and even across the world. I also had more emotional
moments. It was so inspirational to see everyone who had ALS at this conference
and see them fight. It gave me even more passion to fight ALS and to raise more
awareness money so that a treatment is able to be found. Monday night was the
last night we spent with our family, and we again had an amazing time! We went
to Georgetown to eat and it was great!
Tuesday was a very busy day! We attended the closing
ceremony, and before you knew it we were off to Capitol Hill to talk to North
Dakota’s senators and representative. I was very nervous, because it was the
first time that I was lobbying on the Hill. I first went to Representative Rick
Berg’s office, and met with one of his assistants. He was still flying in, but
it was a great experience and she really listened to my story and why it was so
important that the three bills I was lobbying for passed. Next was Senator John
Hoeven’s office. I met with him, and he was such a heart-warming person. He
listened to my story and even watched a video that I made about my mom. I hope
to be sharing that video for everyone soon! My last stop was with Senator Kent
Conrad. He was presenting a bill on the floor, and so I again met with his
assistant. She was an absolutely amazing woman and knew a lot about ALS. She
was my mom’s age, so I think that when she watched the video of my mom it
really hit her. She was so grateful for what I was doing; everyone was. There
were so many people that stopped me when I was walking on Capitol Hill and
asked me questions. I was more than glad to advocate for the ALS Association
and it was such a great time! My sister and I then had to rush to catch our
flight home, but we enjoyed every second we had in Washington D.C. I know that
I am a great advocate for ALS and I am so excited to continue with what I am
doing. We are still waiting to hear if the bills are going to pass, but I
should know more this week.
ALS Facts:
- Only 20% of patients live past 5 years and 10% live past 10 years
- About 10% of ALS is Familial
- Sporadic ALS is the most common in the United States
- ALS is very difficult to diagnose due to the fact there is no specific test to see if you have ALS, it is often diagnosed by ruling out several other diseases
With Love,
Miss North Dakota International
