Pages
- #14210 (no title)
- 18q Syndrome
- 2019 Medical Symposium
- 2020 LCN Winter Meeting Presentations
- 4H Syndrome
- About Us
- ADEM
- ADLD
- AHLE
- ALSP
- AMN
- annual reports & financials
- APBD
- CADASIL
- Cart
- Checkout
- Coats Plus Syndrome (CRMCC)
- Contact Us
- Dine Out For Hope
- financials
- Fucosidosis
- Fukuyama Congenital Muscular Dystrophy
- h.b.
- Help
- Home
- Hope ~ Life
- Books to Inspire
- Comfort Booklet
- Hunter’s Day of Hope and Prayer for Children
- Hunter’s Gifts of Love
- LYHWH – 100th Episode
- LYHWH – Podcast IM
- LYHWH – Podcast Special Messages
- Prayer
- Prayers of Hope
- A Life Worthy
- A New Song
- As I Am
- At All Times
- Be Near
- Because You Know
- Before I Knew You
- Beyond This
- Brokenness Made Whole
- Change Us
- Come to My Rescue
- Enduring Love
- Everything Beautiful
- Everything is Yours
- Fear Not
- Fix My Focus
- Greater Love
- Guard My Mind and Heart
- Healing
- Help Me to Persevere
- I Am Yours
- I Don’t Want to Hurt Anymore
- I Feel Empty
- I Need You
- In My Struggles
- In Repentance and Returning
- In You I Am Home
- In Your Grip
- In Your Hands
- It’s Okay to Cry
- Joy No Matter What
- Joy Will Come
- Letting Go
- Longing to Be with You
- Louder Than Words
- My First Love
- My Purpose
- My Strength and My Song
- Nothing Compares
- One More Day
- Out of Control
- Peace in the Midst of the Storm
- Pray
- Proved Genuine
- Rejoice in the Suffering
- Safe
- Scars
- Set Apart
- Standing Firm
- Surrender All
- The Cross
- The Present
- To Know You More
- Too Much
- Treasure of My Heart
- Trusting You Alone
- Unseen
- Until You Call Me Home
- Victory Will Come
- Waiting
- What More Can I Do?
- What Only You Can Do
- Whatever is True
- When I Call
- When I Don’t Understand
- When I Look at You
- When I Question and Doubt
- When Prayers Aren’t Answered
- Where Are You?
- Who Is Like You?
- Will You Fight for Me?
- You Are Life to Me
- You Are My Rescue
- You Left Your Heart with Me
- The Heart of the Caregiver
- Without a Word
- Wonderful Bear
- World Day of Hope and Prayer for Children
- Light Your Heart With Hope – Podcast Tour
- Light Your Heart With Hope – Resources
- The Immeasurably More Podcast
- 2022 Podcast Retreat
- Abner Family
- Allen Family
- Blackwell Family
- Blanchard Family
- Bourassa Family
- Brackbill Family
- Brooks Family
- Feldt Family
- Goodin Family
- Greene/Shell Family
- Levasheff Family
- Listen
- LYHWH – Podcast Mental Health
- LYHWH – Podcast Seasons
- Marcucci/Bielak Family
- May Family
- Measles Family
- Phillips Family
- Podcast Host
- Schmitt Family
- Sereno Family
- Shullanberger Family
- Wallace Family
- Webb Family
- Wilson Family
- Light Your Heart With Hope – Podcast
- Hope and Prayer
- Hope for Life
- Hunter’s Hope Store
- LBSL
- Leukodystrophy
- About Leukodystrophies
- Adrenoleukodystrophy (ALD)
- Aicardi-Goutières Syndrome (AGS)
- Alexander Disease
- Canavan Disease
- CTX
- FAHN
- GM1 Gangliosidosis
- Infantile Refsum Disease (IRD)
- Krabbe Disease
- Leukodystrophy Types
- Metachromatic Leukodystrophy
- MLC
- Pelizaeus-Merzbacher Disease
- Sjogren-Larsson Syndrome
- Unspecified Leukodystrophy
- Vanishing White Matter Disease
- Zellweger Syndrome
- Clinical Trials and New Treatments
- Hunter’s Wish Gift
- LCN Centers Map
- LCN Leadership
- LCN Organization
- Family Stories
- LCN Care Centers
- LCN Certified Center – Baltimore, MD
- LCN Certified Center – Boston, MA
- LCN Certified Center – Buffalo NY
- LCN Certified Center – Chicago, IL
- LCN Certified Center – Columbus, OH
- LCN Certified Center – Durham, NC
- LCN Certified Center – Mount Sinai Hospital, NY
- LCN Certified Center – Nashville, TN
- LCN Certified Center – Rochester, NY
- LCN Certified Center – Salt Lake City, Utah
- LCN Certified Center – San Antonio, TX
- LCN Certified Center – Stanford, CA
- LCN Certified Center Atlanta
- LCN Certified Center Columbia
- LCN Certified Center NYC
- LCN Certified Center, Sacramento, CA
- LCN Clinical Care Coordinators
- LCN Clinical Practice Guidelines
- LCN Coordinating Center
- LCN Funding Opportunities
- LCN Funding Support
- LCN Videos
- Leukodystrophy Care Network
- Leukodystrophy Publications and Videos
- Leukodystrophy Resource Library
- Medical Symposium
- Morgan’s Legacy Gift
- Symposium
- 2020 Global Virtual Leukodystrophy Symposium
- 2021 Global Virtual Leukodystrophy Symposium
- 2022 Medical and Family Symposium
- 2023 Family Symposium
- 2023 Family Symposium Recap
- 2023 Family Symposium Speaker Directory
- 2023 Medical Symposium
- 2023 Medical Symposium
- 2024 Family Symposium
- 2024 Family Symposium Speaker Directory
- 2024 Medical Symposium
- Past Symposium Programs
- Symposium Partners
- Symposium Sponsors
- About Leukodystrophies
- My account
- NALD
- Nasu-Hakola Disease (NHD)
- Neurology Family Guide
- Newborn Screening
- Newborn Screening for Krabbe – Parent Survey
- ODDD
- Privacy Policy
- Refsum Disease
- Register
- Resource Library
- Resources
- RNAse T2-deficient Leukoencephalopathy
- Shop
- Shop
- Sign Up for News & Updates
- Sitemap
- Special Fundraiser Form
- Tell A Friend
- Thank You for Helping Us Raise Public Awareness for Leukodystrophies
- 2019 Family Symposium
- Historical Research
- Medical & Science Symposium
- Research Publications
- Kelly Family Books
- Kelly Tough 12K Buffalo
Posts by category
- Category: Hunter’s Hope News
- Category: Leukodystrophy Family Stories of Hope
MailPoet Page
Wall of Fame
- Jarrin Family
- Samudrika Family
- Lovell Family
- Tuggle Family
- Fox Family
- McCoy Family
- Tater Family
- Johnson Family
- Maurya Family
- Purschke Family
- Beltran Family
- Conn Family
- Schroeder Family
- Johnson Family
- Fisher Family
- Hoffman Family
- Lalu Family
- Myers Family
- Jones Family
- Dirion Family
- Dirion Family
- Smith Family
- Brooks Family
- Brooks Family
- Havlik Family
- Foreman Family
- Williams Family
- Bell Family
- Renegar Family
- Penney Family
- Dubon Family
- Belyew Family
- Goodin Family
- Goodin Family
- Hazelton Family
- Oagles Family
- Myles Tucker
- Mares Family
- Ahmad Family
- Robinson Family
- Atkins Family
- Wood-Burg Family
- Burroughs Family
- Arizmendi Family
- Schonbachler Family
- Wiber/Mercer Family
- Muhammad Family
- Robberts Family
- Coleman Family
- Sheffer Family
- Sheffer Family
- Finn Family
- Jones Family
- Jones Family
- Van Houten Family
- Whitman-Prince Family
- Dubon Family
- Rennie Family
- Magnúsdóttir Family
- Stewart Family
- Orszula Family
- Jones Family
- Hurst Family
- Hurst Family
- Frost Family
- Feldt Family
- Emery Family
- Menard Family
- Perez Family
- Grujicic Family
- Rodriguez Family
- Butterfield Family
- James Family
- James Family
- Surrett Family
- Leon Family
- Jones Family
- Edwards Family
- Williams Family
- Windsor Family
- Stokes Family
- Newbury Family
- Lingren Family
- Fourie Family
- Rettenmeier Family (Child 2)
- Rettenmeier Family (Child 1)
- Posey Family
- Paul Family
- Haag Family
- Goncalves Family
- Coupe Family
- McKee Family
- Woodard Family
- Scheibe Family
- Menges-LaClair Family
- Phillips Family
- Peters/Cibirka Family
- White Family
- Naccarato Family
- Michael Family
- Stocki Family
- Rumpe Family
- Clausen Family
- Romano Family
- Trimble Family
- Opunui Family Child 2
- Opunui Family Child 1
- Ruchlewicz Family
- Guernsey Family
- Johnson Family
- Petersen Family
- Bohmont Family
- Johnson Family
- Tristan Family
- Gourni Family
- Hazard Family
- Martinez-Galindo Family
- Martinez-Galindo Family
- Phillipy Family
- Menditto-Giliberti Family
- Arizmendi Family
- Armstrong Family
- Lindsey-Minnick Family
- Forman-Shifferly Family
- Atwi Family Child 2
- Atwi Family Child 1
- Butler Family
- Glass-Witgen Family
- Hoffman Family
- Anguiano Family
- Ramsey-Payton Family
- Lewis Family
- Bryant-Wilson Family
- McNamara-Williams Family
- LaVictoire Family
- Al-Faifi Family
- Clarkson Family
- DeRossett Family
- Foster Family
- Morgan O'Donnell Family
- Louter Family
- Bolt Family
- Blackwell Family
- Searle Family
- Landsman Family Child 2
- Landsman Family Child 1
- Morris Family
- Evchich Family Child 2
- Evchich Family Child 1
- DeLaCruz Family
- Kennedy Family
- Crowell Family
- Chynn Family Child 2
- Chynn Family Child 1
- Morse Family
- Ponce Family
- Wooton Family
- Shelton Family
- Keiser Family
- Johnson Family
- Almassri Family
- Wilson Family
- Rauner Family
- Moody Family
- Miller Family
- Main Family
- Luczak Family
- Casey Family
- Jessee Howard Family
- Garcia Family
- Stroup Family
- Nichols-Jenkins Family
- Shullanberger Family
- Herring Family Child 2
- Mohr Family
- Patil Family
- Branch Family
- Wheeler Family
- Barnett Family
- Rivera Family Child 1
- Rivera Family Child 2
- O'Hanlon Family
- Sain Family
- Galindo Family Child 2
- Price Family Child 3
- Daniels Family Child 2
- Herring Family Child 1
- Hadnot Family
- Shoemaker Family
- Tears
- Believe
- Newborn Screening
- NBS Bears Psalm 23:4
- Love Endures
- The Lord your God
- Hope and a Future
- Friends & Family
- Fountain of Life
- Songs of Joy
- Children of God
- His Purpose
- Trust in the Lord
- Fearfully and Wonderfully Made
- Love
- Faith
- Arnieri Family
- Arthurs Family
- Barnett Family
- Barron Family Child 2
- Barron Family Child 1
- Bateman Family
- Bayford Family
- Bazar Family
- Beatty Family
- Behnken-Brown Family
- Bensel Family
- Benson Family
- Benson Family
- Bentley Family
- Bison Family
- Bjarlestam Family
- Blanchard-Brown Family
- Bonney Family
- Borodychuk Family
- Bourassa Family Child 2
- Bourassa Family Child 1
- Brackbill Family
- Bramlett Family
- Brooks Family
- Brown Family
- Brueske Family
- Bunte Family
- Burk Family
- Butler Family
- Buttrum Family
- Cagle Family
- Calaman Family Child 1
- Calaman Family Child 2
- Cammarata Family
- Canale Family
- Carlson Family
- Caruso Family
- Casavechia Family
- Casey Family
- Cassin-Potts Family
- Changle Family
- Chappell Family
- Christiansen Family
- Chumbley Family
- Claassen Family
- Claflin Family
- Clayton Family Child 2
- Clayton Family Child 1
- Claverie Family
- Cole Family Child 1
- Cole Family Child 2
- Cooley Family Child 2
- Cooley Family Child 1
- Cooper Family
- Cousineau Family
- Craft Family
- Crilly Family
- Cross Family Child 1
- Cross Family Child 2
- Cullen Family Child 1
- Cullen Family Child 2
- Cunningham Family
- Cushman Family
- Daigneault Family
- D'Amico Family
- Daniels Family Child 1
- Davis Family
- Davis Family
- Dement Family
- Dion Family Child 2
- Dion Family Child 1
- Donaire-Bechtel Family
- Dotti Family
- Droessler Family
- Duffer Family
- DuPerron Family
- du Toit Family
- Elmouzayen Family
- Eveland Family
- Faria Family
- Fedorak Family Child 2
- Fedorak Family Child 1
- Flinchum Family
- Flores Family
- Forde Family
- Forgione Family
- Forslind Family Child 1
- Forslind Family Child 3
- Forslind Family Child 2
- Foss Family
- Foster Family
- Francisco Family
- Freeman Family
- Freeman Family
- Frisch Family
- Froio Family
- Frye Family
- Gala Family
- Galindo Family Child 1
- Galvan Family
- Garbe Family
- Garcia Family
- Garcia Family Child 1
- Garcia Family Child 2
- Gaston Family
- Gavriilidis Family
- Gelhart Family
- Gerlitz Family
- Gibson Family
- Ginion Family
- Given Family
- Glaudemans Family
- Gonzalez Family
- Gonzalez Family
- Goss Family
- Green Family
- Greene Family
- Gwin Family
- Haines Family Child 1
- Haines Family Child 2
- Hallock Family
- Hamid Family
- Hammonds Family
- Harris Family
- Hartman-Barlow Family
- Hauer Family
- Hayslett Family
- Heckendorf Family
- Heflin Family
- Heidrich Family
- Hernandez Family
- Hernandez Family
- Hernandez Family
- Hill Family
- Hodges Family
- Holland Family
- Howard Family
- Hudson Family
- Hughes Family
- Huitema Family
- Irving Family
- Jackson Family
- Jarrell Family Child 1
- Jarrell Family Child 2
- Jarrell Family Child 3
- Jawaid Family
- Jeffries Family
- Vasquez Family
- Johnson Family
- Johnson Family
- Joiner Family Child 1
- Joiner Family Child 2
- Jones Family
- Kadlubowski Family
- Karivalavan Family
- Keene Family
- Kemist Family
- Kelly Family
- King-Otter Family Child 1
- King-Otter Family Child 2
- Klafehn Family
- Klein Family Child 2
- Klein Family Child 1
- Knibbs-Skiddy Family
- Koester Family
- Kogut Family
- Kristoff Family Child 2
- Kristoff Family Child 1
- Kruger Family
- Krupa Family
- Lairson Family
- Lafe Family
- Layton Family
- Leeker Family
- Leonard Family
- Levasheff Family
- Levidis Family
- Lewis Family
- Lipe Family
- Little Family
- Lockhart Family
- Lorg-Luse Family
- Loughheed Family
- Lundblad Family
- Lyle Family
- Macpherson Family
- Malfara Family
- Manzo Family
- Markel-Lapine Family Child 1
- Markel-Lapine Family Child 2
- Marsh Family
- Marshall Family
- Martin Family
- Martin Family
- Martinez Family
- Mattina Family Child 1
- Mattina Family Child 2
- Maubach Family
- Maughan Family Child 2
- Maughan Family Child 3
- Maughan Family Child 1
- May Family
- Mcadams-Allen Family
- Mccall Family
- Mccurry Family
- McClure Family
- McCormick Family
- McGregor-Goodrich Family
- McNichol Family
- Measles Family
- Messerschmidt Family
- Meyer Family
- Middleton Family
- Middleton-Snider Family Child 1
- Middleton-Snider Family Child 2
- Middleton-Snider Family Child 3
- Milego Family
- Miles Family Child 2
- Miles Family Child 1
- Miller Family
- Miller Family
- Mills Family
- Mills Family
- Mogavero Family
- Moore Family Child 2
- Moore Family Child 1
- Moreland Family
- Morris Family
- Morris Family Child 2
- Morris Family Child 1
- Munishvaran Family
- Murphy Family
- Murray Family
- Myerscough Family
- Nelkie Family
- Nickerson Family
- Nims Family
- Nivens Family
- Nobis Family
- Nocera Family
- O'Boyle Family
- O'Brien Family
- O'Keefe Family
- Ochoa Family
- Ordoyne Family
- Osman Family Child 1
- Osman Family Child 2
- Palamaro Family
- Paquette Family
- Parke Family
- Peacock Family
- Pitra Family
- Place Family
- Jurek-Plasky Family Child 2
- Jurek-Plasky Family Child 1
- Price Family Child 2
- Price Family Child 1
- Prichard Family
- Ramos Family
- Randell Family
- Raney Family
- Ranken Family
- Ravnjak Family
- Rebol Family
- Riegel Family
- Robinson Family
- Rodriguez Family
- Rogers Family Child 2
- Rogers Family Child 1
- Rugari Family Child 1
- Rugari Family Child 2
- Rushe Family
- Rutherford Family
- Santana Family
- Santucci Family
- Schmitt Family
- Schroeder Family
- Schroeder Family
- Scott Family
- Sears Family
- Sears Family
- Seeger Family
- Sereno Family Child 2
- Sereno Family Child 1
- Sevilla Family
- Sharp Family
- Shell-Greene Family Child 2
- Shell-Greene Family Child 1
- Shilling Family
- Silbernagel-Frazier Family
- Simmons Family
- Sluis Family
- Smallwood Family
- Smith Family
- Smith Family
- Smith Family
- Smith Family
- Sontag Family
- Spinello Family
- Spraggins Family
- Springer Family
- St. Clair Family
- Stoeckle Family
- Sturtevant Family
- Stutzman Family
- Sugden Family
- Suhr Family Child 1
- Suhr Family Child 2
- Summers Family
- Sunilkumar Family
- Suppan Family Child 1
- Suppan Family Child 2
- Sutkay Family
- Syed Family
- Taylor Family
- Taylor Family
- Taylor Family
- Thompson Family
- Thoms Family
- Tierney Family
- Trimper Family Child 2
- Trimper Family Child 1
- Trimper Family Child 3
- Town Family
- Troia Family Child 2
- Troia Family Child 1
- Uresti Family
- Uribe Family
- Vance Family
- Vaughan Family
- Viglianco Family Child 3
- Viglianco Family Child 2
- Viglianco Family Child 1
- Villalobos Family
- Viscomi Family
- Wagner Family
- Wagner Family
- Wallace Family
- Wallace Family
- Walters Family
- Ward Family
- Warechowski Family
- Watson-Winkler Family Child 1
- Watson-Winkler Family Child 2
- Webb Family (KY) Child 1
- Webb Family (TN) Child 1
- Webb Family (TN) Child 2
- Webb Family (KY) Child 2
- Wendland Family
- Wesley Family
- Wesselius Family
- Wharton Family
- Whidby Family Child 2
- Whidby Family Child 1
- White Family
- White Family
- Willett Family
- Williams Family
- Williams Family
- Wilson Family
- Wilson Family Child 1
- Wilson Family Child 2
- Windley Family
- Spencer-Witczak Family
- Wood Family
- Woodall Family
- Wright Family
- Wyse Family
- Zimmerman Family
- Andersson Family
- Amador Family
- Akers Family
- Altavilla Family
- Plans
- Agee Family
- Brown Family
- Aldrian Family
- Abner Family
- Allan Family
- Ackerly Family
- Almy Family
Documents
- 2024 Medical Symposium Presentations
- Librarey
- Newborn Screening for Krabbe Disease: Status Quo and Recommendations for Improvements
- 10 Truths to Anchor You in Healing
- Help for Insurance Denials
- Patient Advocate Foundation
- Nursing Care Medical Necessity Template
- Krabbe Newborn Screening Publications
- Leukodystrophy Publications & Videos
- Kids Leukodystrophy Guide
- Helpful Resources
- Wish Gift
- Equipment & Supply Exchange
- Wall of Fame
- Family Programs
- About Hunter Kelly
- The Heart of the Caregiver
- Imagine Heaven
- Prayers of Hope for the Brokenhearted
- Without a Word
- Consensus Guidelines for Newborn Screening, Diagnosis and Treatment of Infantile Krabbe Disease
- Family Attitudes Regarding Newborn Screening for Krabbe Disease
- Benefits of Newborn Screening and Hematopoietic Cell Transplant in Infantile Krabbe Disease
- Krabbe NBS - A Family Guide
- Comfort Booklet
- Light Your Heart With Hope - Booklet 2021
- Light Your Heart With Hope - Booklet 2022
- 10 Truths to Anchor You in Healing
- Light Your Heart With Hope - Booklet 2023
- Special Episodes - Podcast
- Immeasurably More with Jill & Erin - Podcast
- Family Stories - Podcast
- Let's Talk About Mental Health
- My Mental Health Story - Erin Kelly-Bean
- My Mental Health Story - Jill Kelly
- ALD Connect
- Neurology - Family Guide - Pain
- Neurology - Family Guide - Cognition
- Neurology - Family Guide - Seizures
- Neurology - Family Guide - Sleep
- NBS Fact Sheet - Oklahoma
- LOKD NBS Guidelines
- Pulmonary Issues
Document Categories
- 10 Truths to Anchor You in Healing
- ALD
- Family Programs
- Hope ~ Life
- Inspirational Books
- Insurance
- Krabbe
- Leukodystrophies
- Light Your Heart With Hope - Podcast
- Mental Health
- MLD
- Neurology
- Newborn Screening
- Pulmonary