Welcome to the Hunter’s Hope Resource Library!

This is a library for affected families, medical professionals, scientists, and others with interest. It was created to provide easy access for the entire Leukodystrophy community and others who may benefit from the information and hope shared.

Please stay as long as you like. Grab a comfy chair, your favorite drink, and browse to your heart’s content.

We are so happy you are here!

The Library will be continually updated. So, please return often. If you have any comments, questions, or ideas for adding to the Library, please email info@huntershope.org. We would love to hear from you!

10 Truths to Anchor You in HealingThis is a printable version of the 10 Truths to Anchor You in Healing discussed on the Mental Health podcast …10-truths-to-anchor-you-in-healing mental-health hope-life
10 Truths to Anchor You in HealingSpeak the truth out loud. Choose your hard. Labels do not define you. We don’t heal in isolation. Let others be your vision …mental-health hope-life
About Hunter KellyLearn about Hunter and his journey with Krabbe disease, through a Message of Love from his mom, Jill. There are …hope-life
ALD ConnectALD Connect is a non-profit organization supporting ALD Leukodystrophy that brings together patients, families, physicians, scientists, advocates, and industry., ald leukodystrophies
Benefits of Newborn Screening and Hematopoietic Cell Transplant in Infantile Krabbe DiseaseInfantile Krabbe Disease (IKD) can be treated with hematopoietic cell transplantation (HCT) if done during the first weeks of life …, , krabbe leukodystrophies newborn-screening
Comfort BookletComfort – that’s what this book is about. And it’s my hope and prayer that as you read these pages …, hope-life inspirational-books
Consensus Guidelines for Newborn Screening, Diagnosis and Treatment of Infantile Krabbe DiseaseConsensus Guidelines for Newborn Screening, Diagnosis, and Treatment of Infantile Krabbe Disease, , krabbe leukodystrophies newborn-screening
Equipment & Supply ExchangeHunter’s Hope Equipment and Supply Exchange program has been designed to help fulfill the equipment and supply needs of Leukodystrophy …family-programs
Family Attitudes Regarding Newborn Screening for Krabbe DiseaseThis is about Family Attitudes regarding Newborn Screening for Krabbe Disease resulting from a Survey of Leukodystrophy Registries., , krabbe leukodystrophies newborn-screening
Family ProgramsHunter’s Hope offers many programs for Leukodystrophy families. They include the Wall of Fame, Wish Gift, Equipment and Exchange, and …family-programs
Family Stories – PodcastFamily Stories – The Light Your Heart With Hope podcast is founded on the belief that our stories matter… not …light-your-heart-with-hope-family-stories-podcast hope-life
Help for Insurance DenialsResources from the Patient Advocate Foundation for Insurance Denials. If your insurance plan refuses to approve or pay for a …, , , , ald insurance krabbe leukodystrophies mld
Helpful ResourcesThere are many great organizations and resources available for families caring for a child with a Leukodystrophy., family-programs leukodystrophies
Imagine HeavenJoin John Burke as he shares his book, Imagine Heaven. It is an inspirational journey through the Bible’s picture of …, hope-life inspirational-books
Immeasurably More with Jill & Erin – PodcastI am so excited to have my mom join me every week for mini episodes where we have real, honest, …light-your-heart-with-hope-family-stories-podcast hope-life
Kids Leukodystrophy Guide“Just for Kids:  This Thing Called Leukodystrophy” This is a special book written for kids by kids., hope-life leukodystrophies
Krabbe NBS – A Family GuideLearning your child received a positive newborn screening result can be scary and overwhelming. Although there is a lot of …, , krabbe leukodystrophies newborn-screening
Krabbe Newborn Screening PublicationsHunter’s Hope is committed to ensuring that all infants with a positive screen for Krabbe Disease have the best possible …, , krabbe leukodystrophies newborn-screening
Let’s Talk About Mental HealthErin and Jill talk about the importance of mental health and why it matters for all of us. They share …mental-health hope-life
Leukodystrophy Publications & VideosThe Leukodystrophy Publications and Videos section of our website includes valuable information developed through the LCN and shared at Hunter’s …, , , , , , ald krabbe leukodystrophies mld neurology newborn-screening pulmonary
LibrareyWhere rare disease families find and share resources.leukodystrophies
Light Your Heart With Hope – Booklet 2021Sometimes life is hard. From the events happening around the world to the heartbreak in our own homes – life …, hope-life inspirational-books
Light Your Heart With Hope – Booklet 2022Where do you turn when you feel hopeless? Where do you run when you’re falling apart and want to give …, hope-life inspirational-books
Light Your Heart With Hope – Booklet 2023This booklet is inspired by our Light Your Heart With Hope podcast! Our podcast is founded on the belief that …, , hope-life inspirational-books light-your-heart-with-hope-family-stories-podcast
LOKD NBS GuidelinesLater Onset Krabbe Disease(LOKD) Consensus recommendations for the classification and long-term follow up of infants who screen positive for Krabbe …, , krabbe leukodystrophies newborn-screening
My Mental Health Story – Erin Kelly-Bean“I don’t know where to begin or how much of my mental health journey I’m ready to share right now. …mental-health hope-life
My Mental Health Story – Jill Kelly“I’m so thankful to be here… and to be able to share my story, but also to share that I …mental-health hope-life
NBS Fact Sheet – OklahomaSaving Children’s Lives in Oklahoma through Timely, Equitable Access to Newborn Screening. Featuring the Abner Family., , leukodystrophies mld newborn-screening
Neurology – Family Guide – CognitionNeurology Family Guide Symptomatic Leukodystrophy Cognitionneurology
Neurology – Family Guide – PainNeurological Family Guide Painneurology
Neurology – Family Guide – SeizuresNeurology Family Guide Symptomatic Leukodystrophy Seizuresneurology
Neurology – Family Guide – SleepNeurology Family Guide Symptomatic Leukodystrophy Sleepneurology
Newborn Screening for Krabbe Disease: Status Quo and Recommendations for ImprovementsLearn about the history of newborn screening for Krabbe Disease and the recommendations for states screening for Krabbe to ensure …, krabbe newborn-screening leukodystrophies
Nursing Care Medical Necessity TemplateTemplate letter from an LCN Care Coordinator to help families obtain nursing care., , , , ald insurance krabbe leukodystrophies mld
Patient Advocate FoundationPatient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit organization which provides case management services and financial aid to …, , , , ald insurance krabbe leukodystrophies mld
Prayers of Hope for the BrokenheartedSometimes the deepest hurts are the most difficult to express. Times of heartbreak and sorrow can also be times of …, hope-life inspirational-books
Pulmonary IssuesThe combination of immobility, muscle weakness, skeletal deformity, and swallowing impairment, are leading causes of respiratory deterioration in patients with …pulmonary
Special Episodes – PodcastSpecial Messages are messages that God has placed on our hearts that Erin and Jill feel led to share.light-your-heart-with-hope-family-stories-podcast hope-life
The Heart of the CaregiverJoin Mary Tutterow as she shares her heart in her book, The Heart of the Caregiver. She presents the path …, hope-life inspirational-books
Wall of FameHundreds of Leukodystrophy families have contacted Hunter’s Hope since we started the Foundation in 1997. The Wall of Fame is …family-programs
Wish GiftThe Wish Gift helps families in the United States who face extreme financial stress attributed to the costs associated with …family-programs
Without a WordWithout a Word is more than a memoir, this book contains a mother’s heart – pieces of precious, journaled memories …, hope-life inspirational-books