THE TIMELINE OF JACIFUSEN; Congressional Record Vol. 165, No. 107
(House of Representatives - June 25, 2019)

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[Pages H5081-H5082]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                       THE TIMELINE OF JACIFUSEN

  The SPEAKER pro tempore. The Chair recognizes the gentleman from Iowa 
(Mr. King) for 5 minutes.
  Mr. KING of Iowa. Mr. Speaker, I appreciate being recognized to 
address you here on the floor of the United States House of 
Representatives.
  I rise today to honor Jaci Hermstad. She has given me so much 
inspiration.
  I want to start, though, with the early, sad part of this story. This 
is a sad story with a happy part in the middle of it right now, Mr. 
Speaker.
  Jaci's identical twin sister, Alex, was diagnosed with a very severe 
and aggressive form of ALS. That took place in 2005. Then, by 2010 and 
2011, my staff and, especially, Sandy Hanlon in our Sioux City office, 
were working with the Hermstads to do those things we could do, in a 
limited fashion, admittedly.
  On St. Valentine's Day of 2011, sadly, Jaci's identical twin sister, 
Alex, passed away at age 17. Now, that is 8 years ago. About 2015 or 
so, Jaci and her mother, Lori, came to my office to talk with me about 
ALS, this dreaded Lou Gehrig's disease, that always ends up fatal. It 
always ends up in a sad, tragic ending. They had experienced that with 
Jaci's identical twin sister.
  Even more sadly, there was news that symptoms showed up in Jaci late 
last fall, around the holiday time. By Christmas she couldn't get up 
the stairs any longer, and again, on St. Valentine's Day of this year, 
Jaci was diagnosed with the aggressive form of ALS that her identical 
twin sister had passed away from.

[[Page H5082]]

  Now, they had donated some of her sister's tissue to science, and two 
significant companies, Columbia University, and Dr. Neil Shneider began 
doing DNA work on that preparing a treatment for Jaci. This treatment 
wasn't available for Jaci soon enough in her view, her family's view, 
or in my view. The FDA had to work through their regulations. As we 
worked through that, it looked like Jaci couldn't get this potentially 
miraculous treatment before perhaps September or October. At the rate 
of the digression of her condition, it didn't look like she was going 
to be with us long enough to receive the treatment.
  Some of us went to work to step up and help Jaci. I got involved on 
April 13 of this year when my wonderful district staff person, Andrea 
Easter, who had been working with the family all along, brought me up 
and we did a fundraiser there at the Spencer AG Center on April 13, a 
Saturday.

  It was a cold and chilly day when we arrived there. There were 
pickups parked on either side of the road to the Spencer AG Center. It 
looked like we were going to a farm sale there were so many vehicles 
there.
  They had only expected maybe 100 people, and the Clay County 
Cattlemen were there to flip maybe 100 burgers and put out a basket for 
people to put a check in. They thought they could raise $3,000 to 
$5,000 just as a token, as a way to help.
  The story about that day is, it turned out that there were over 1,000 
people who came. And they raised in the end, the last report I got, was 
over $200,000.
  I sat with Jaci that day and talked about her dreams to build a 
riding arena and train horses for therapy for others and to be able to 
help people.
  She is a cowgirl, Mr. Speaker. I committed that I will come up and 
grade that arena on the house, and I will be on the machine to do it. I 
look forward to that day.
  But we had more work to do. So that story that day got us all 
energized. We kept her in our prayers every day. By May 2 we had a 
meeting with Dr. Woodcock and the FDA.
  We moved along even further. By May 20 I introduced a private bill. I 
tried to convince my Senators to do the same. They thought there would 
be an objection to a UC in the Senate.
  I brought this to Speaker Pelosi. She was terrific to work with. We 
had several meetings all together, with Steny Hoyer and with her staff. 
Before that bill could come to the floor for a unanimous consent 
request, the FDA opened the door and Jaci went wheels up January 5 to 
go to Columbia.
  She received her first treatment on June 11, and today, starting 5 
minutes from now, Mr. Speaker, she will receive her second treatment. 
There has been no noticeable digression in her condition. I am hopeful 
and prayerful that it will improve. We have a chance here at a miracle.
  So many people worked so well together to get this done, including 
the press people around the Spencer, Iowa, area. I want to especially 
mention Stella ``With the Good Heart'' Daskalakis. I always call her 
Stella ``With the Good Heart.'' She has done so much, along with KICD 
Radio, KTIV, KUOO, and KSFY in Sioux Falls.
  Mr. Speaker, I am so grateful for everyone who has formed a link in 
this chain of miracles. We are on our way to an extraordinary miracle. 
We will keep Jaci in our prayers this day as she receives her second 
treatment for ALS.

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