Nikola Strong

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La imagen del año 🫶

May the force be with you! 🚀🪐

HAPPY HALLOWEEN! 🎃

Dragan Grujičić

Lana M. Grujičić

That smile 😍

Dragan Grujičić

The Hunter’s Hope Foundation Leukodystrophy Care Network (LCN) is a network of medical providers, hospitals, organizations, and affected families. Our mission is to revolutionize the health and quality of life of individuals affected by Leukodystrophies with proactive, innovative, and comprehensive medical care standards and specialized centers throughout the U.S., Canada and eventually the world.

You can learn more about the on our website – https://www.huntershope.org/family-care/hunters-hope-leukodystrophy-care-network/

After driving through 3 states and two days of appointments at UPMC Children's Hospital of Pittsburgh , we finally get to enjoy each other.

Daddy's boy.

Dragan Grujičić
Lana M. Grujičić

🔎 "What if my state doesn't screen for Krabbe Disease?" 🤔

Worried about your state's newborn screening? If your state doesn't screen for Krabbe Disease, there's a solution. 👶💙

Lysosomal Storage Disorder Newborn Screening (NBS) is a screening option, no matter where your child is born.

Thanks to a partnership with PerkinElmer Genetics, Inc., Hunter's Hope offers discounted packets. Click the link to learn more and access the discounted PerkinElmer kit: https://loom.ly/MKQpo-w

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Dragan Grujičić Lana M. Grujičić

Saves Lives!
Currently, 11 states screen for at birth -- we won't stop fighting until every child has the chance at life they deserve.
Learn more about how you can take action in your state: https://www.huntershope.org/newborn-screening/take-action/

Warrior.

Dragan Grujičić Lana M. Grujičić

September is Newborn Screening Awareness month!

This year marks 60 years of Newborn Screening – a lifesaving public health program that screens infants for dozens of rare but treatable diseases at birth.

Learn more about Newborn Screening and our NBS initiatives here: https://www.huntershope.org/newborn-screening/

Never forget what happened on that day, the countless lives lost, and how that tragedy made us all come together.

And I'll also never forget sharing an incredible moment 4 years ago, on my birthday, with my son at the 9/11 memorial. It was one of the most profound experiences of my life.

Never forget.

Dragan Grujičić

They haven't seen each other in a year. It was amazing to see their joy when they saw him! The girls are so caring and love Nikola so much! ❤️💙💙❤️

Dragan Grujičić Lana M. Grujičić

This one hits hard. Mila was one of the first friends Nikola made after being diagnosed. We fell in love with her and her family right away. Our hearts break for them all. We just take comfort in knowing that she is free from Krabbe.

Mila also fought alongside Nikola for Krabbe newborn screening to be added in VA. This is another reason why we will never give up the fight. 

Rest in peace sweet Mila! 💔💗💗💗

Our precious Angel bug passed from this earth in the loving embrace of her mother, listening to sweet lullabies from brother and father. She grew wings on the 18th of July at 830 p.m.

Our friend John from Simple works of leather LLC. made me this awesome hat. Send me a message if you would like one. The hat is $30.

John and I have agreed to have $10 from each hat go to Hunter's Hope Foundation . I will also cover the shipping if you would like me to send you the hat in the mail.

NNFD Fire Station 11/A participated in a fundraiser for FFM Brandon Smith's daughter Aubry recently. Aubrey has been diagnosed with MICPCH (deletion of the CASK gene) and the 5K event was held to bring awareness and a hope in finding further treatments and therapies. Way to go 11/A! (Pictured SFF/P Ryan Howard, FFM Brandon Smith & Cpt. Ryan Fleischer)

Ms. Robin started out as Nikola's physical therapist shortly after he got diagnosed with Krabbe Disease (around 6 months) and since then has become family. She comes to see him EVERY week. The pictures of Nikola and Ms. Robin are from earlier today. He absolutely loves the sound of her voice as you can tell by those big beautiful eyes.

Oh, and Ms. Robin sends Nikola a personilized MONTHLY birthday card like the one we received in the mail today. :)

She is amazing and we are so thankful for her!

Lana M. Grujičić Dragan Grujičić

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Dragan Grujičić Lana M. Grujičić

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Lana M. Grujičić

Thank you for all the prayers and well wishes. It means the world to us and we felt all of the love. Nikola is doing better.
He is keeping his oxygen levels up all on his own and the nerve pain has finally stopped. He has been getting a lot of rest the last two days but we are hopeful that he's almost back to his normal.
❤️
Dragan Grujičić Lana M. Grujičić

"About 1 in every 125-150 people is a carrier for Krabbe Disease."

🧬Let's explore what it means to be a carrier of Krabbe disease.

Being a carrier of Krabbe disease involves having one working and one non-working copy of the gene responsible for Krabbe disease (GALC). It's important to note that carriers usually do not experience any signs or symptoms of Krabbe disease themselves.

It's crucial to understand that being a carrier for one or more genetic conditions is relatively common, and carriers are not at fault for their child having Krabbe disease. Researchers estimate that approximately 1 in every 125-150 individuals is a carrier for Krabbe disease.

Knowledge is power! By increasing awareness about carrier status, we can help individuals make informed decisions and support families affected by Krabbe disease. Together, let's promote understanding and compassion. Learn more at https://loom.ly/WbpToMo 💙

Good morning friends,
This morning we are asking everyone with faith to pray for our Nikola. He has had a really rough two weeks. Last week he was struggling to keep his oxygen levels up and we had a few very scary nights. He had two days of a little relief and now he is  battling severe nerve pain. He is so strong and tough but he can use your help right now. I believe in the power of prayer so I ask you all to pray for him that he gets better soon. I mean real prayers. Not just Facebook comments please.
 We are doing everything we can think of to help our boy, but we are emotionally and physically exhausted. The lack of sleep paired with watching your child struggle to breathe, and cry in pain while not being able to do much to help takes its toll. It’s in times like this that it’s easy to lose faith so I’m also asking you to pray for us. Ask God to give us strength and peace to keep fighting this fight.
Thank you.❤️

Dragan Grujičić Lana M. Grujičić

Disease screening for newborns varies by state. For some, that means diagnoses come too late. After their children were diagnosed with a rare disease that requires early intervention, some parents are pushing to change policies on genetic screenings for babies.

A win for the community. A special thank you to Stacy Pike-Langenfeld and for nominating Krabbe disease to the Minnesota Newborn Screening Advisory Committee.

Minnesota becomes the 12th state to approve the screening of Krabbe disease in .

A little getaway to unplug and relax.
Dragan Grujičić Lana M. Grujičić

My handsome boy! Cuddling with momma with no nasal cannula 💙💙💙

Dragan Grujičić Lana M. Grujičić

Too often families struggle to navigate through a diagnosis of Krabbe disease and find appropriate information to make critical life decisions for their loved ones. In KrabbeFacts, the strength of many has come together to help provide an introduction to Krabbe disease and a jumping point to continue learning more.

Come take a peek at the information and resources key Krabbe disease collaborators have brought together for the community at https://krabbefacts.org/.

Hunter's Hope Foundation KrabbeConnect Leukodystrophy Newborn Screening Action Network Forge Biologics

Let's go Carolina Hurricanes !!!

Dragan Grujičić

Don’t forget to put in your application! Deadline is May 1st! 🎓📚✏️

Dragan Grujičić
Lana M. Grujičić
Newport News Fire Department

Don’t forget!
There are only 5 days left
To apply!

Open to all NN Firefighter/Medics, your dependent children or your spouse! Go to cfaaa-NNfD.org for the application.

If you are moved by this, we invite you to sign the community petition.
Help us save future babies. 

Dragan Grujičić
KrabbeConnect
Leukodystrophy Newborn Screening Action Network

KrabbeConnect Gala 2020 Short Interview with Grujicic Family This video was utilized for the 2020, "A Million Dreams," Gala. A great story of a family impacted by infantile Krabbe disease. If this story moves you, he...

An update on the unfair RUSP committee vote:

“Many stakeholders came together during the WORLDsymposia to construct a letter to Secretary Xavier Becerra on our concerns. These include procedural inconsistencies, noncompliance with charter bylaws and meeting procedures, gaps in evidence provided for review, misconstrued understanding of current medical practices, and factually inaccurate and misleading statements in the committee’s report that led to a tied Committee vote and ultimately a recommendation against adding Krabbe disease to the Recommended Uniform Screening Panel (RUSP). We believe that procedures were not followed, that the review was not conducted appropriately, and therefore that the recommendation put forth by the Committee does not satisfy article 42 U.S.C. § 300b-10.

For these reasons, and due to the non-compliant “even” vote outcome from the ACHDNC’s meeting on February 9, 2023, we respectfully request that either you act as the deciding vote on the recommendation of Krabbe Disease to the RUSP or request a re-vote to occur with sufficient members. “

If you are moved by this, we invite you to sign the community petition now. The link is below.

https://actionnetwork.org/letters/7bf2448b5a45df8770f600dffbfd87a03379c4d8?source=direct_link&fbclid=IwAR0dT-Jk0WD4MgYt1dFIbu9In-x0FyUF_cyvgiIgrrz3SFz5djXXj7ZHOAo

Your voice matter!

Krabbe Newborn Screening Saves Lives For almost two decades, the Hunter's Hope Foundation has been fighting for newborn screening (NBS) for Krabbe Disease. Krabbe is a truly horrible and deadly disease. If babies are not screened for the disease at birth through their state's newborn screening program, they will be diagnosed too late f...

The LCN Pulmonary Clinical Practice Guidelines were recently published in Current Problems in Pediatric and Adolescent Health Care.

Pulmonary complications are very common for children and adults with leukodystrophies but can be managed through proactive, informed care. These guidelines are a resource for medical providers everywhere who have patients with these diseases.

You can read the guidelines here:
https://www.huntershope.org/?p=12344