• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Little Miss Hannah Foundation

Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.

Make a Donation Volunteer Apply for Services
  • About Us
    • Our Mission
    • Meet our Team
    • Photos/Videos
      • Photos
      • Videos
    • Latest News
    • Our Impact Results
  • Hannah’s Story
  • Programs
    • Medical-Therapy Equipment Assistance Program
    • College Scholarship
    • Childhood Rare Disease Advocacy
    • Family Support and Activities
  • 2022 Tee Up FORE Rare Golf
  • 2023 Vegas Rare 5K
  • Get Help
    • Become a LMHF Family
    • Make-A-Wish Referrals
    • Resources
  • Get Involved
  • Contact us

March 21, 2017 by Carrie Ostrea

Woman to Run Las Vegas Area Half Marathon in 50-State Quest to Fight Rare Disease


Effort Honors Henderson Charity, Little Miss Hannah Foundation, and Charlotte Charity, Taylor’s Tale

CHARLOTTE, N.C. – Taylor King, 18, ran two 5K races after losing her vision to a rare, fatal condition called infantile Batten disease. Now her older sister, Laura King Edwards, is running in all 50 states to honor her and support one in 10 Americans fighting a rare disease. Edwards will run the first leg of Calico Racing’s three-day Rally in the Valley running festival on March 31, marking state number 16 in her quest for 50.

“After her diagnosis, Taylor could have quit, but giving up was never in her DNA,” said Edwards, 35. “The image of my sister finishing her first 5K despite being blind and fighting Batten disease will be with me forever. She inspires me in all that I do.”

In Nevada, Edwards will also run for the late Hannah Ostrea, who lost her battle with Gaucher Disease type 2/3 in 2011. Hannah’s parents, Carrie and Robert Ostrea, founded Henderson’s Little Miss Hannah Foundation shortly after Hannah’s death. Though answers didn’t come in time to save Hannah, today the people who love her work to ensure other Southern Nevada families battling rare and complex diseases have access to crucial medical equipment and support services.

“We couldn’t save our daughter, but the tireless efforts of our team and others, like Taylor’s Tale, are bringing new hope to suffering children and their families,” Carrie said. We’ll never forget our youngest daughter’s beautiful spirit, and we’ll always work to support her legacy by doing all we can to help others like her.”

Like the Ostreas, Edwards and her family founded a charity, Taylor’s Tale, to help build a better future for children with Batten disease and others fighting rare diseases. As leaders within the rare disease community, Taylor’s Tale and the Little Miss Hannah Foundation are moving mountains not just in their hometowns, but across the United States and worldwide.

According to the National Institutes of Health, approximately one in 10 Americans (about 25 million people in the U.S.) has a rare disease. In the U.S., a condition is considered rare if it affects fewer than 200,000 persons combined in a particular rare disease group.

“Rare disease impacts more people than HIV and cancer combined,” Edwards said. “People like Taylor and Hannah are an inspiration, and their courage serves as a reminder that while a disease may be rare, hope should not be.”

Filed Under: Blog, LMHF News

Primary Sidebar

Our Upcoming Event!


Tee Up FORE Rare 2022
 

Featured Programs


Medical and Therapy Equipment Grant Program

Site Info

  • About Us
  • Our Mission
  • Latest News
  • Hannah’s Story
  • Programs

Get Involved!

  • Become a LMHF Family
  • Upcoming Events
  • Donate
  • Volunteer
  • Rare Disease Advocacy

Contact Us

10624 S. Eastern Avenue, Suite A-847
Henderson, NV 89052
Phone: (702) 608-2488
Fax: (702) 541-9957

Privacy Policy

Connect With Us

  • Email
  • Facebook
  • Instagram
  • Twitter

Copyright © 2023· Little Miss Hannah Foundation · Site By New Wave Media Design
Little Miss Hannah Foundation is a 501(c)(3) tax-exempt nonprofit corporation, EIN# 45-3993921