Hunter's Hope Foundation

Hunter's Hope Foundation Working toward treatments and a cure for Krabbe & Leukodystrophies, advocating for newborn screening and supporting those affected by these diseases.

The Leukodystrophy Care Network includes 16 certified LCN Centers across the country. Each center meets established crit...
06/11/2026

The Leukodystrophy Care Network includes 16 certified LCN Centers across the country. Each center meets established criteria ensuring families have access to knowledgeable teams who understand the complexity of leukodystrophies.

Together, these centers form a national network dedicated to advancing care, sharing best practices, and improving outcomes for patients and families.

Visit our website to see the full list of our current certified LCN Centers: https://www.huntershope.org/family-care/leukodystrophy-care-network/lcn-care-centers/

The Hunter’s Hope Foundation Leukodystrophy Care Network (LCN) is a national network of specialized medical centers comm...
06/09/2026

The Hunter’s Hope Foundation Leukodystrophy Care Network (LCN) is a national network of specialized medical centers committed to improving care for individuals and families affected by leukodystrophies.

The LCN brings together expert clinicians, nurse care coordinators, industry partners, and families to ensure patients receive coordinated, informed, and compassionate care.

At its core, the LCN is about connection, collaboration, and putting families at the center of care.

Learn more about the LCN on our website - https://www.huntershope.org/family-care/hunters-hope-leukodystrophy-care-network/

Introducing Tammy Wilson…💗“Motherhood is not simply what I became —it is who I was always meant to be.It is six souls wo...
06/01/2026

Introducing Tammy Wilson…💗

“Motherhood is not simply what I became —
it is who I was always meant to be.

It is six souls woven into my heart,
four carried beneath it,
all six carried within it forever.

It is sleepless nights and whispered prayers,
hospital walls and holy miracles,
laughter echoing through chaos,
and learning that love can survive even the deepest heartbreak.

I have held fragile lives in trembling hands,
watched courage breathe through tiny bodies,
and loved children whose strength changed the meaning of strength itself.

Six children I held for earth.
One child I now hold for heaven.

And though heaven took him beyond my arms,
it could never take him beyond my motherhood.
He still speaks to me in sunsets, songs, memories, numbers,
and the quiet moments only a grieving mother understands.
Love does not end at the rainbow bridge.
It simply learns how to reach farther.

The children who did not grow beneath my heart
were still written into my destiny by God Himself.
Because motherhood is not measured by blood —
it is measured by the fierce, unconditional way a woman chooses to love.

Some days motherhood feels overwhelming,
like drowning in responsibility, exhaustion, fear, and worry.
But even then, I suffocate in gratitude more than burden,
because I know these lives are my greatest blessing.

To be called “Mom”
is the most sacred title I will ever carry.

I am the keeper of memories,
the protector of fragile hearts,
the safe place,
the prayer warrior,
the comfort after storms.

And if my life has taught me anything,
it is this:

Motherhood is not perfection.
It is immeasurable, unconditional love —
the kind that survives grief,
crosses heaven,
and still chooses every single day
to love bigger than the pain.
I suffocate in gratitude and love in my greatest blessing.”

Introducing Anna Castaneda…💗“Motherhood has taught me how much of myself needs to be surrendered. Not in a heavy way, bu...
06/01/2026

Introducing Anna Castaneda…💗

“Motherhood has taught me how much of myself needs to be surrendered. Not in a heavy way, but in a holy one. It has shown me that love looks like dying to my own comfort, my own expectations, and choosing to show up anyway. Again and again. God has used motherhood to soften me, stretch me, and remind me that in my weakness, He is faithful. To the moms walking a hard road, you don’t have to do this perfectly, just keep doing the next right thing.”

Introducing…. Kaprice Shullanberger…💗“A mother’s strength comes from love, and there is no force on earth more powerful....
06/01/2026

Introducing…. Kaprice Shullanberger…💗

“A mother’s strength comes from love, and there is no force on earth more powerful.”

“As a young woman, I never thought motherhood was part of God’s plan for my life. Looking back now, I can see that His plan was far greater than anything I could have imagined. Brixton and Bryleigh are both miracles and have become the greatest blessings I have ever received. Through them, God taught me compassion, unconditional love, patience, and a strength I never knew I possessed.

Although my heart carries the pain of losing Bryleigh, I find comfort in knowing that every moment with her was a gift. She forever changed my life and continues to remind me of the depth of a mother’s love. Through both joy and heartbreak, God has faithfully carried me and shown me that His love never leaves us.

Ten years ago, I lost my mother, Tricia Reinhard, and not a day goes by that I don’t feel the impact of her love and guidance. She helped shape the woman I am today and gave me the foundation to become the mother I strive to be. I truly believe God knew exactly what He was doing when He chose me to be Brixton and Bryleigh’s mom. Motherhood has been my greatest blessing, my greatest teacher, and one of the most powerful ways I have experienced God’s grace.”

Introducing… Judy Cushman💗 “This too shall pass”“As a Mom, you don’t want your children to go through hardships. You wan...
05/26/2026

Introducing… Judy Cushman💗

“This too shall pass”

“As a Mom, you don’t want your children to go through hardships. You want to take away their pain, but for some reason we aren’t able to take away their pain. We can only provide support and comfort to get them through. Also letting them know that even on the bad days eventually good days are ahead.”

Introducing Heather Arizmendi…💗“Motherhood has been the most painful and beautiful calling of my life. I became a mother...
05/25/2026

Introducing Heather Arizmendi…💗

“Motherhood has been the most painful and beautiful calling of my life. I became a mother when Evelyn was born, and she forever changed me. Loving her through her fight, and losing her, shaped the deepest parts of my heart. Then came Molly, who gave me a reason to keep going, and Owen, who reminds me every day what true perseverance looks like.

This journey has brought unimaginable pain, but also a love so deep it helps me turn even the heaviest moments into joy. Our story is one of loss, love, and unwavering faith. I may not have the answers, but I choose to keep moving forward, living bigger, loving harder, and finding joy in every moment we have together. Because even in the presence of grief, we still choose joy.”

GREAT NEWS: Mississippi is now screening newborns for Krabbe disease!Newborn screening for Krabbe is so important — earl...
05/23/2026

GREAT NEWS: Mississippi is now screening newborns for Krabbe disease!

Newborn screening for Krabbe is so important — early detection can change everything.

We are so thankful for everyone whose hard work helped make this possible.

Thank you, Mississippi!

Introducing Chanell Hawk…💗The short quote that I really like is:“You are still a mother. God chose you for that baby and...
05/22/2026

Introducing Chanell Hawk…💗

The short quote that I really like is:
“You are still a mother. God chose you for that baby and for their life. No matter how short or how long. You were hand-selected to be their mama, that is such an honor and a privilege.” -Kristin Hernandez

“What Motherhood has taught me is that life can be chaotic, fun times, good memories, soaking in all of them cuddles, loving every moment even when that meant changing her g-tube, or doing her shaky vest, or just being able to take her to Valley Fair even when she was asleep most of the time, but being able to enjoy those small moments with your child especially when you have baby or child that has a terminal disease it’s hard to enjoy the little moments or the little things in life as life can feel chaotic in a house built around a child that has a terminal disease.

The advice I can give others is to slow down, soak in all the little moments with your baby, child or children. Take pictures lots of pictures. Enjoy the little things in life as life goes by way too fast.”

There’s still time to register for next month’s free webinar: Optimizing Newborn Screening for Krabbe Disease.Learn from...
05/21/2026

There’s still time to register for next month’s free webinar: Optimizing Newborn Screening for Krabbe Disease.

Learn from experts in the field as they share real-world experience and practical approaches to Krabbe newborn screening. The session will cover psychosine testing, screening strategies, clinical follow-up, and key insights from states actively screening for Krabbe disease.

The webinar is designed for state newborn screening programs, public health laboratories, and medical professionals involved in screening, follow-up, and care.
Register here: https://www.huntershope.org/newborn-screening/krabbe-newborn-screening/

Address

PO Box 643, 21 Princeton Place Suite 12
Orchard Park, NY
14127

Opening Hours

Monday 8:30am - 4:30pm
Tuesday 8:30am - 4:30pm
Wednesday 8:30am - 4:30pm
Thursday 8:30am - 4:30pm
Friday 8:30am - 4:30pm

Telephone

+17166671200

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