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!
| Title | Content | Image | Categories | Link | hf:doc_categories |
|---|---|---|---|---|---|
| 10 Truths to Anchor You in Healing | This 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 | 10-truths-to-anchor-you-in-healing mental-health hope-life | |
| 10 Truths to Anchor You in Healing | Speak 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 | mental-health hope-life | |
| 2024 Medical Symposium Presentations | View presentations from the 2024 Medical Symposium. | ALD, Insurance, Krabbe, Leukodystrophies, MLD, Neurology, Newborn Screening | ald insurance krabbe leukodystrophies mld neurology newborn-screening | ||
| About Hunter Kelly | Learn about Hunter and his journey with Krabbe disease, through a Message of Love from his mom, Jill. There are … |  | Hope ~ Life | hope-life | |
| ALD Connect | ALD Connect is a non-profit organization supporting ALD Leukodystrophy that brings together patients, families, physicians, scientists, advocates, and industry. |  | ALD, Leukodystrophies | ald leukodystrophies | |
| Benefits of Newborn Screening and Hematopoietic Cell Transplant in Infantile Krabbe Disease | Infantile Krabbe Disease (IKD) can be treated with hematopoietic cell transplantation (HCT) if done during the first weeks of life … |  | Krabbe, Leukodystrophies, Newborn Screening | krabbe leukodystrophies newborn-screening | |
| Comfort Booklet | Comfort – that’s what this book is about. And it’s my hope and prayer that as you read these pages … |  | Hope ~ Life, Inspirational Books | hope-life inspirational-books | |
| Consensus Guidelines for Newborn Screening, Diagnosis and Treatment of Infantile Krabbe Disease | Consensus Guidelines for Newborn Screening, Diagnosis, and Treatment of Infantile Krabbe Disease |  | Krabbe, Leukodystrophies, Newborn Screening | krabbe leukodystrophies newborn-screening | |
| Equipment & Supply Exchange | Hunter’s Hope Equipment and Supply Exchange program has been designed to help fulfill the equipment and supply needs of Leukodystrophy … |  | Family Programs | family-programs | |
| Family Attitudes Regarding Newborn Screening for Krabbe Disease | This is about Family Attitudes regarding Newborn Screening for Krabbe Disease resulting from a Survey of Leukodystrophy Registries. |  | Krabbe, Leukodystrophies, Newborn Screening | krabbe leukodystrophies newborn-screening | |
| Family Programs | Hunter’s Hope offers many programs for Leukodystrophy families. They include the Wall of Fame, Wish Gift, Equipment and Exchange, and … |  | Family Programs | family-programs | |
| Family Stories – Podcast | Family Stories – The Light Your Heart With Hope podcast is founded on the belief that our stories matter… not … |  | Light Your Heart With Hope - Podcast | light-your-heart-with-hope-family-stories-podcast hope-life | |
| Help for Insurance Denials | Resources from the Patient Advocate Foundation for Insurance Denials. If your insurance plan refuses to approve or pay for a … | ALD, Insurance, Krabbe, Leukodystrophies, MLD | ald insurance krabbe leukodystrophies mld | ||
| Helpful Resources | There are many great organizations and resources available for families caring for a child with a Leukodystrophy. |  | Family Programs, Leukodystrophies | family-programs leukodystrophies | |
| Imagine Heaven | Join John Burke as he shares his book, Imagine Heaven. It is an inspirational journey through the Bible’s picture of … |  | Hope ~ Life, Inspirational Books | hope-life inspirational-books | |
| Immeasurably More with Jill & Erin – Podcast | I am so excited to have my mom join me every week for mini episodes where we have real, honest, … |  | Light Your Heart With Hope - Podcast | 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 | hope-life leukodystrophies | |
| Krabbe NBS – A Family Guide | Learning your child received a positive newborn screening result can be scary and overwhelming. Although there is a lot of … |  | Krabbe, Leukodystrophies, Newborn Screening | krabbe leukodystrophies newborn-screening | |
| Krabbe Newborn Screening Publications | Hunter’s Hope is committed to ensuring that all infants with a positive screen for Krabbe Disease have the best possible … |  | Krabbe, Leukodystrophies, Newborn Screening | krabbe leukodystrophies newborn-screening | |
| Let’s Talk About Mental Health | Erin and Jill talk about the importance of mental health and why it matters for all of us. They share … | | Mental Health | mental-health hope-life | |
| Leukodystrophy Publications & Videos | The 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 | ald krabbe leukodystrophies mld neurology newborn-screening pulmonary | |
| Librarey | Where rare disease families find and share resources. | Leukodystrophies | leukodystrophies | ||
| Light Your Heart With Hope – Booklet 2021 | Sometimes life is hard. From the events happening around the world to the heartbreak in our own homes – life … |  | Hope ~ Life, Inspirational Books | hope-life inspirational-books | |
| Light Your Heart With Hope – Booklet 2022 | Where do you turn when you feel hopeless? Where do you run when you’re falling apart and want to give … |  | Hope ~ Life, Inspirational Books | hope-life inspirational-books | |
| Light Your Heart With Hope – Booklet 2023 | This 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 - Podcast | hope-life inspirational-books light-your-heart-with-hope-family-stories-podcast | |
| LOKD NBS Guidelines | Later 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 | 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 | 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 | mental-health hope-life | |
| NBS Fact Sheet – Oklahoma | Saving Children’s Lives in Oklahoma through Timely, Equitable Access to Newborn Screening. Featuring the Abner Family. |  | Leukodystrophies, MLD, Newborn Screening | leukodystrophies mld newborn-screening | |
| Neurology – Family Guide – Cognition | Neurology Family Guide Symptomatic Leukodystrophy Cognition | Neurology | neurology | ||
| Neurology – Family Guide – Pain | Neurological Family Guide Pain | Neurology | neurology | ||
| Neurology – Family Guide – Seizures | Neurology Family Guide Symptomatic Leukodystrophy Seizures | Neurology | neurology | ||
| Neurology – Family Guide – Sleep | Neurology Family Guide Symptomatic Leukodystrophy Sleep | Neurology | neurology | ||
| Newborn Screening for Krabbe Disease: Status Quo and Recommendations for Improvements | Learn about the history of newborn screening for Krabbe Disease and the recommendations for states screening for Krabbe to ensure … | Krabbe, Newborn Screening | krabbe newborn-screening leukodystrophies | ||
| Nursing Care Medical Necessity Template | Template letter from an LCN Care Coordinator to help families obtain nursing care. | ALD, Insurance, Krabbe, Leukodystrophies, MLD | ald insurance krabbe leukodystrophies mld | ||
| Patient Advocate Foundation | Patient 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 | ald insurance krabbe leukodystrophies mld | ||
| Prayers of Hope for the Brokenhearted | Sometimes the deepest hurts are the most difficult to express. Times of heartbreak and sorrow can also be times of … |  | Hope ~ Life, Inspirational Books | hope-life inspirational-books | |
| Pulmonary Issues | The combination of immobility, muscle weakness, skeletal deformity, and swallowing impairment, are leading causes of respiratory deterioration in patients with … | Pulmonary | pulmonary | ||
| Special Episodes – Podcast | Special Messages are messages that God has placed on our hearts that Erin and Jill feel led to share. |  | Light Your Heart With Hope - Podcast | light-your-heart-with-hope-family-stories-podcast hope-life | |
| The Heart of the Caregiver | Join Mary Tutterow as she shares her heart in her book, The Heart of the Caregiver. She presents the path … |  | Hope ~ Life, Inspirational Books | hope-life inspirational-books | |
| Wall of Fame | Hundreds of Leukodystrophy families have contacted Hunter’s Hope since we started the Foundation in 1997. The Wall of Fame is … |  | Family Programs | family-programs | |
| Wish Gift | The Wish Gift helps families in the United States who face extreme financial stress attributed to the costs associated with … |  | Family Programs | family-programs | |
| Without a Word | Without a Word is more than a memoir, this book contains a mother’s heart – pieces of precious, journaled memories … |  | Hope ~ Life, Inspirational Books | hope-life inspirational-books |