• 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

October 11, 2012 by Carrie Ostrea

“Sequestration” and its Drastic Effects for Rare Disease

Sequestration is a term to describe the massive across-the-board cuts that the federal government will impose on all non-defense spending starting in January 2013 if Congress does not act to stop it. This was a result of both parties not agreeing on a plan to cut the federal deficit.

What does this mean for those of us in the rare disease community?

The National Institutes of Health (NIH) is one of a handful of government agencies which conduct research and provide opportunities to scientists, academia and biotech companies to discover, test and implement new treatments and cures for rare diseases affecting over 30 million people in the United States alone, approximately half of which are children.  If sequestration comes to fruition, the NIH’s budget is estimated to be cut by an astounding $2.3 billion.

This would eliminate thousands of grant opportunities provided to researchers who are dedicated to finding treatments and cures for rare diseases.  This could also jeopardize a number of important studies conducted by the NIH’s National Human Genome Research Institute whose mission is to map the human genome and to apply genome technologies to study genetic components of complex disorders and rare diseases.

Hannah at her NIH visit in July 2010 with Dr Ellen Sidransky, Dr. Ozlem Goker-Alpan, and Catherine Groden N.P.

These activities are important in learning more about rare diseases to aid in finding treatments and, ultimately, cures for these conditions.  My daughter, Hannah, was a patient of the institute and we traveled three times to the NIH campus in Bethesda, MD in an effort to learn more about her rare condition.  Hannah participated in a Natural History Study for Neuronopathic Gaucher’s Disease Type 2/3 which will offer researchers and caregivers clues on how this disease progresses and provide them with the information they need to properly treat patients suffering from this disease as well as to help find a cure.

Dramatically reducing the NIH budget as mandated under sequestration will have an immediate effect on rare disease research.  Millions of children who suffer from rare diseases will not benefit from less research and development resulting from massive cuts at the NIH.

It is imperative for all patient and parent advocates to contact our representatives to urge them to come to a resolution to stop the sequestration process.

 

Filed Under: Blog, Front Tagged With: Legislation

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