Hunter's Hope
  • About Us
    • Mission
    • Hunter
      • Hunter at 1…7
      • Celebrating Hunter’s Life
      • Hunter’s Tribute
    • Kelly Family Story
    • Hunter’s Hope Team
  • Contact Us
  • + DONATE
  • Hope ~ Life
    • Wall of Fame for Children
    • Hunter’s Day of Hope & Prayer for Children
    • World Day of Hope and Prayer for Children
    • Without a Word
    • Prayers of Hope
    • Wonderful Bear
  • Leukodystrophy
    • Leukodystrophies
      • Leukodystrophy Types
      • ALD
      • Alexander Disease
      • Krabbe Disease
      • Metachromatic Leukodystrophy
      • Unspecified Leukodystrophy
    • Leukodystrophy Care Network (LCN)
      • LCN Leadership
      • LCN Coordinating Center
      • LCN Care Centers
      • LCN Clinical Care Coordinators
      • LCN Clinical Practice Guidelines
      • LCN Funding Support
    • Leukodystrophy Resource Library
    • Leukodystrophy Family Support
      • Family Registration
      • Wish Gift
      • Equipment & Supply Exchange
      • Helpful Resources
    • Newborn Screening
      • What is Newborn Screening?
      • Krabbe Disease Screening
      • Take Action
      • Supplemental Newborn Screening
    • 2020 Global Virtual Leukodystrophy Symposium
  • Get Involved
    • Hunter’s Hero
    • Jim Kelly Tailgate
    • Jim Kelly’s NFL Draft Party
    • Jim Kelly – The Glory Years
    • Special Fundraisers
    • Strategic Partners
    • Volunteer
  • Shop for Hope
    • Supplemental Newborn Screening
    • Bears – Collectible, Limited Edition
    • Hunter’s Hero
    • Kelly Family Books
    • “Light Your Heart With Hope”
    • Kelly Tough Gear
    • h.b.
Donate
  • Hope ~ Life
    • Wall of Fame for Children
    • Hunter’s Day of Hope & Prayer for Children
    • World Day of Hope and Prayer for Children
    • Without a Word
    • Prayers of Hope
    • Wonderful Bear
  • Leukodystrophy
    • Leukodystrophies
      • Leukodystrophy Types
      • ALD
      • Alexander Disease
      • Krabbe Disease
      • Metachromatic Leukodystrophy
      • Unspecified Leukodystrophy
    • Leukodystrophy Care Network (LCN)
      • LCN Leadership
      • LCN Coordinating Center
      • LCN Care Centers
      • LCN Clinical Care Coordinators
      • LCN Clinical Practice Guidelines
      • LCN Funding Support
    • Leukodystrophy Resource Library
    • Leukodystrophy Family Support
      • Family Registration
      • Wish Gift
      • Equipment & Supply Exchange
      • Helpful Resources
    • Newborn Screening
      • What is Newborn Screening?
      • Krabbe Disease Screening
      • Take Action
      • Supplemental Newborn Screening
    • 2020 Global Virtual Leukodystrophy Symposium
  • Get Involved
    • Hunter’s Hero
    • Jim Kelly Tailgate
    • Jim Kelly’s NFL Draft Party
    • Jim Kelly – The Glory Years
    • Special Fundraisers
    • Strategic Partners
    • Volunteer
  • Shop for Hope
    • Supplemental Newborn Screening
    • Bears – Collectible, Limited Edition
    • Hunter’s Hero
    • Kelly Family Books
    • “Light Your Heart With Hope”
    • Kelly Tough Gear
    • h.b.

LCN Videos

  1. Home
  2. Leukodystrophy
  3. Leukodystrophy Care Network
  4. LCN Videos

Learn more about the important work of the LCN…

Watch the Full LCN Video…

We need your help to get there…  Donate Today

 

We are the Families

https://vtpkb4cbz742mpwjg43ich01-wpengine.netdna-ssl.com/wp-content/uploads/2015/11/LCN-Parent-Letter-640x360.mp4

Care Centers

The Leukodystrophy Care Centers provide Early Diagnosis, Treatment, Multidisciplinary Care, Prevention, Symptom Management, and Education.  Learn more here.

Clinical Practice Guidelines (CPGs)

CPGs will establish a published, peer-reviewed standard of care to ensure that individuals with Leukodystrophy have the best possible medical care, improving length and quality of life.  Learn more here.

Clinical Trials & Treatments

National Library of Medicine

American Society of Gene & Cell Therapy

Gene Therapy 101

MLD Embolden Study

Study in Patients with Inherited Metabolic Disorders (IMD) Undergoing Hematopoietic Stem Cell Transplantation

HHS Hematopoietic Stem Cell Gene Therapy –Progress and Lessons Learned

Family Stories

Families affected by Leukodystrophies share how they have been touched by the LCN.  Read more here.

LCN Videos

Families and Medical Experts share about the LCN here.

Support the LCN

Ready to fundraise? Start here.

Learn more about how you can support here.

Strategic Partners

We are thankful for our strategic partners who share our vision for the LCN.

B4B LogoThe Believing for Bryleigh Foundation 

 

The Jackson Project

 

BethanysHope Logo - Dave and Lyndey McIntyre's FoundationBethanysHope Foundation

 

You can find a full list of our Strategic Partners here.

  • Column 1
    • Donate
    • About Us
      • Mission
      • Hunter
      • Kelly Family Story
      • Hunter’s Hope Team
    • Contact Us
  • Column 2
    • Leukodystrophies
      • Leukodystrophy Care Network
      • About Leukodystrophies
      • Wall of Fame for Children
      • Family Registration
      • Family & Medical Symposium
      • Equipment & Supply Exchange
      • Wish Gift
  • Column 3
    • Newborn Screening
      • What is Newborn Screening?
      • Krabbe Disease Screening
      • Take Action
      • Supplemental Newborn Screening
    • Research
  • Column 4
    • Get Involved
      • Hunter’s Hero
      • Hunter’s Day of Hope
        and Prayer for Children
      • Jim Kelly’s NFL Draft Party
      • Jim Kelly – The Glory Years
      • Special Fundraisers
      • Strategic Partners
      • Volunteer
    • Shop for Hope
  • Home
  • Krabbe & Leukodystrophies
  • Krabbe Disease
  • About Leukodystrophies
  • Research
  • Newborn Screening
  • Leukodystrophy Care Network
  • Leukodystrophy
  • Get Involved
  • About Us
  • Contact Us
Hunter's Hope

PO Box 643
Orchard Park, NY 14127
(716) 667-1200

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© 2020 Hunter's Hope. All rights reserved.

"For I know the plans I have for you," declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11

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