Congressman Steve King

Representing the 4th District of Iowa

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King Honors Jaci Hermstad on the House Floor

Jun 25, 2019
Press Release

Hermstad, fighting ALS, receives second administration of experimental therapy today

Washington, D.C.- Congressman Steve King releases this transcript of remarks he delivered on the floor of the House of Representatives today that honor Jaci Hermstad of Spencer, Iowa. Hermstad, who is fighting a rare and highly aggressive form of ALS, receives her second administration of an experimental gene-therapy treatment today. Jaci’s treatment schedule was accelerated by the FDA following the introduction of King’s “Jaci’s Bill” (HR 2855) legislation in May.

To watch Congressman King deliver his remarks, click the image or click this link.

Thank you, 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, and that took place in 2005. By 2010-11, my staff, and especially Sandy Hanlon in our Sioux City office, were working with the Hermstad’s to do those things we could do in a limited fashion, admittedly.

But on St. Valentine’s Day of 2011, sadly, Jaci’s identical twin sister Alex passed away at age 17. That’s eight 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.

And they had experienced that with Jaci’s identical twin sister. Well, even more sadly, the news of symptoms showed up in Jaci late last fall around 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.

Now, they had donated some of her sister’s tissue to science, and two significant companies, and Columbia University. And Dr. Neil Schneider 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. FDA had to meet their regulations, and 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.

So, some of us went to work to step up and help Jaci. I got involved on April 13th 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, April 13th, on a Saturday.

And it was a cold and chilly day. When we arrived there, there were pickup trucks 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 one hundred people, and the Clay County Cattlemen were there to flip maybe one hundred burgers, and a basket for some people to put a check in. They thought they could raise $3000 to $5000 dollars, just as a token of a way to help. Well this story that day turned out that there were over one thousand people that 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. Her dream is to build a riding arena and train horses for therapy for others, and to be able to help people. She’s a cowgirl, Mr. Speaker. And I committed-I’ll come up and grade that arena on the house. I’ll be on the machine to do it. And I look forward to that day.

But we had more work to do. And so, that story that day got us all energized and we kept her in our prayers every day. By May 2nd, I had a meeting with Dr. Woodcock at the FDA. We moved along even further.

By May 20th, 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 altogether, and 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’ June 5th to go to Columbia. She received her first treatment on June 11th.

Today, starting five minutes from now, Mr. Speaker, she’ll receive her second treatment.

There’s been no noticeable digression in her condition. I’m 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,’ who has done so much, along with KICD Radio, KTIV, KUOO, and KSFY in Sioux Falls.

Mr. Speaker, I’m so grateful for everyone who has formed a link in this chain of miracles. We’re on our way to an extraordinary miracle, and we’ll keep Jaci in our prayers this day as she receives her second treatment for ALS.

Thank you, and I yield back.”

Related:

King Welcomes FDA’s Decision to Expedite Jaci Hermstad’s Treatment. (5/24/19)

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