She credits an experimental stem cell treatment with giving her new hope for her health and her future -- a newfound hope that also caught attention of Republican Rep. Pete Olson.
"She is the face of the 21st Century Cures Act because of what she's gone through in her life," he said Tuesday.
"It became pretty clear to me that ... I (have) got to tell her story," he said. "That's why she's here: She's awesome."
Immediately after the House vote, Hughes said, Olson called her at home to invite her to be his guest of honor.
"I still cannot believe I will be in the same room as our President and lawmakers," she said before attending Trump's speech.
It took Crowley's father, John, to launch the New Jersey biotechnology company Amicus Therapeutics to identify a drug treatment that would save her life, Trump said.
"If we slash the restraints, not just at the FDA but across our Government, then we will be blessed with far more miracles like Megan," he said. "In fact, our children will grow up in a Nation of miracles."
Hughes spent most of her adolescence hospitalized, as she became so sick that she could barely walk and suffered immense pain. Her body was evaluated, treated and studied at the National Institutes of Health in collaboration with her doctors from the University of Texas Health Science Center at Houston.
Yet relief came in 2014, when Hughes received a high-dose adult stem cell treatment that was not approved in the United States.
For the procedure, Hughes had her own healthy stem cells cultured at the FDA-registered biotechnology company Celltex Therapeutics in Houston. Then she traveled to Cancun, Mexico, to have the cells infused back into her body.
Each infusion involved about 200 million stem cells, and Hughes received some 22 infusions over almost two years. The cells could help normalize her immune system, which was overactive due to her autoimmune disease.
Before the stem cell therapy, Hughes said, she was taking 23 medications a day. Now, she is on eight medications at lower doses.
"If not for the help of high-dose autologous mesenchymal stem cell therapy, I would not be here today," Hughes said at the hearing.
"I was running out of time, but I was willing to put my life at risk to get on an airplane. My quality of life had become so dismal, even one small improvement from my own stem cells would have been enough for me," she said in her speech. "What happened in the days, weeks and years following my first infusion has changed my outlook. It's hard to believe, in my sick body, I had a wealth of healthy adult stem cells with the ability to so significantly improve my quality of life."
"My hope is that our new President will spend time looking at how to help all Americans have access to new therapies like the one I had," she said.
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Stem cell treatment changed the life of one guest at Trump's speech - CNN
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- 018 International Stem Cell Corporation Signs Financing Agreement [Last Updated On: May 6th, 2010] [Originally Added On: May 6th, 2010]
- 019 CSC news links 2010-05-08 [Last Updated On: May 9th, 2010] [Originally Added On: May 9th, 2010]
- 020 CSC news links 2010-05-08 [Last Updated On: May 9th, 2010] [Originally Added On: May 9th, 2010]
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- 025 US Patent: Isolation and use of solid tumor stem cells [Last Updated On: May 18th, 2010] [Originally Added On: May 18th, 2010]
- 026 US Patent: Isolation and use of solid tumor stem cells [Last Updated On: May 18th, 2010] [Originally Added On: May 18th, 2010]
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- 032 International Stem Cell Corporation Moves International Cornea Development Program Forward [Last Updated On: May 26th, 2010] [Originally Added On: May 26th, 2010]
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- 034 Phase I clinical trial of ICT-107 [Last Updated On: June 3rd, 2010] [Originally Added On: June 3rd, 2010]
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- 043 New Article from North County Times - BIOTECH: International Stem Cell Clears Debt, Gets Patent [Last Updated On: June 17th, 2010] [Originally Added On: June 17th, 2010]
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- 045 Patent application: Levels of Oct1 as a method of identifying CSCs [Last Updated On: June 18th, 2010] [Originally Added On: June 18th, 2010]
- 046 Patent application: Levels of Oct1 as a method of identifying CSCs [Last Updated On: June 18th, 2010] [Originally Added On: June 18th, 2010]
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- 049 International Stem Cell Corporation Names Charles J. Casamento to Board of Directors [Last Updated On: June 23rd, 2010] [Originally Added On: June 23rd, 2010]
- 050 International Stem Cell Corporation Names Charles J. Casamento to Board of Directors [Last Updated On: June 23rd, 2010] [Originally Added On: June 23rd, 2010]
- 051 International Stem Cell Corporation (ISCO.OB) Announces New Patent Issuance Under License Agreement [Last Updated On: June 25th, 2010] [Originally Added On: June 25th, 2010]
- 052 International Stem Cell Corporation (ISCO.OB) Announces New Patent Issuance Under License Agreement [Last Updated On: June 25th, 2010] [Originally Added On: June 25th, 2010]
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- 054 California Health Institute Interviews Jeffrey Janus - CEO of Lifeline Cell Technology [Last Updated On: June 29th, 2010] [Originally Added On: June 29th, 2010]
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