Panel Discussion  State NBS Programs
1:29:32
Transition of Care by Catie Becker
18:45
Пікірлер
@bwlong
@bwlong 3 ай бұрын
Omg
@milanperera2156
@milanperera2156 4 ай бұрын
It’s a great presentation ❤ good luck for the future clinical trials
@shelleydavis5231
@shelleydavis5231 6 ай бұрын
This woman sounds tired
@JacobMutumbo
@JacobMutumbo 9 ай бұрын
Finna take a nap I'll update you in a sec. .toothpick. .but really can only give em the NBA roster thas it-💍👖🧺📨🚦🔒💋🇵🇫
@ananthkumar.m1755
@ananthkumar.m1755 9 ай бұрын
Why contrast enhancement will not happen in other leukodystrophy?? It will never happen or there is chance?
@JacobMutumbo
@JacobMutumbo 9 ай бұрын
Can't give the family tree but my babys respect their mom it's just two things to do. .if they run nothing I can do about it. But I can't give them to nobody it's religious at this point. .his mom is my secretary an the other one is a young man who couldn't just be truthful an go to gay school an got a sexual transmitted disease he can't get rid of . .think about it. .nobody over here has sexually transmitted diseases . .if you tell you can never be of the known here. .there's rules. .can't nobody do what I do because I know what to do an is privately asked to do my job in the midst of. .I take panties but not playfully or jokingly they'll never want another man to have em but there's a special way I discipline the tobacco industries I'm managed by all. My wives an have no rights whether I'm older or younger it doesn't matter due to the fact of emaculent-parenting by women of Asia an Europe I'm under arrest by their mom an her table its different they dont have the emotion be careful those two throw tantrums an paralyze people-x
@charlescabana7849
@charlescabana7849 10 ай бұрын
Thank you.
@Nyagrafalls10
@Nyagrafalls10 Жыл бұрын
Is there a place that we can go to watch all these interviews in full?
@HuntersHope
@HuntersHope Жыл бұрын
You could try John Burke's website or Facebook page!
@Nyagrafalls10
@Nyagrafalls10 Жыл бұрын
@@HuntersHope thanks so much!
@Wileycoyoteee
@Wileycoyoteee Жыл бұрын
Woooo
@jeannieves6275
@jeannieves6275 Жыл бұрын
🙏🏽
@lynx6124
@lynx6124 Жыл бұрын
To me 'Imagine Heaven' by John Burke was one of the most important books I've ever read>> a compilation of different NDE experiences by various people and the effects it had in their lives! A page turner!!
@valentinyazbek2980
@valentinyazbek2980 Жыл бұрын
how could a blind from birth even know what light or trees are if never being taught before.They would see it in the nde but wouldn't know what it is
@SomethingAboutBeautee
@SomethingAboutBeautee Жыл бұрын
I know all of us have different beliefs BUT one thing that should be mandatory is early testing even if there’s no symptoms showing because the symptoms don’t show until it’s too late for the most part. We should ALL want that kind of health security for our children. ❤
@AudinJeffries
@AudinJeffries Жыл бұрын
❤❤
@myahbattley1291
@myahbattley1291 Жыл бұрын
2010
@myahbattley1291
@myahbattley1291 Жыл бұрын
❤❤❤❤❤❤❤❤❤😢😢😢😢😢😢😢😢❤❤❤❤❤❤😢😢😢
@myahbattley1291
@myahbattley1291 Жыл бұрын
Aswr you tomorrow and went back and looked we can get together soon and
@myahbattley1291
@myahbattley1291 Жыл бұрын
😂😂😂😂😂😂😂😂😂😂😂😂😂❤❤😂😂😂😢😢😢😢😢😢😢😢😢
@myahbattley1291
@myahbattley1291 Жыл бұрын
2015
@myahbattley1291
@myahbattley1291 Жыл бұрын
Aswe Jamal Adams county Ohio health and we can go out and Alaska t
@karenproulx5902
@karenproulx5902 Жыл бұрын
Wow I am an assisted NDER with my husband it was the greatest experience of my life I didn’t see heaven in it glory but a hall with rooms we glided down this hall with arched white doors closed and one opened I knew this was the one my husband was to go through but he wouldn’t let go of me I couldn’t convince him to go he did go to my joy it was a wonderful experience praise the lord
@vetchemh3
@vetchemh3 Жыл бұрын
I'm waiting on a diagnosis for my son and we are fearful it may be a variant of leukodystrophy. With recent mri advancements being able to study individual neurons in real time and AI being introduced into the fray what breakthroughs are being made right now? I read about a case published in February of monochromatic leukodystrophy being cured. Any insight into progress would be appreciated ❤️
@HuntersHope
@HuntersHope Жыл бұрын
Hi Vetch emh2! Thank you for reaching out about your son. We'd love to have you register with us: www.huntershope.org/home/hope-for-families/get-support/affected-family-registration/ This will help us to learn more about your son and we can discuss the latest treatments and options. We look forward to hearing from you!
@vetchemh3
@vetchemh3 Жыл бұрын
@Hunter's Hope We received the diagnosis on Monday and they have determined my son unfortunately has krabbe disease. Thank you for responding so quickly. Since Monday I have had several people reference you guys as a wonderful source and beacon of light for any family going through this. We will definitely be registering on your site. Thank you for all that you do ❤️❤️❤️
@ramosjanish738
@ramosjanish738 Жыл бұрын
😭
@rupashree-bm8ho
@rupashree-bm8ho Жыл бұрын
My daughter is 12 years old she is suffering for leukodytrohy I'm Indian please help me out or give any solution
@HuntersHope
@HuntersHope Жыл бұрын
Hi Rupa! When you have a moment, please register with us here: www.huntershope.org/home/hope-for-families/get-support/affected-family-registration/ This helps us to learn more about you and your daughter and how we can best help you. Once we receive your registration, we'll be in touch!
@ramyasree3210
@ramyasree3210 Жыл бұрын
I'm also from India my baby is 9 months old he also has hypomyelinating leukodystrophy 2 how is ur baby now
@l.l.790LLS
@l.l.790LLS Жыл бұрын
Thank you! This message really helps me. I pray that more people can hear this.
@carolineconnor6214
@carolineconnor6214 Жыл бұрын
Thank you for sharing. I often watch your videos and your guests every since both my mother and brother died 11 years ago (God honored my prayer to allow them to die at the same time, and He did). Watching brings me incredible comfort. He DOES love us!!!!!
@jasoningram1988
@jasoningram1988 2 жыл бұрын
💫😇 Eye Would Love To See Jill BloG 😇💫
@sharonmccann1421
@sharonmccann1421 2 жыл бұрын
This if true is so very helpful.. Livening God and neighbor seems to come true in these near death experiences as described by Dr. Burke and Dr. Neal. I hope this is the truth about what happens Amen.
@lifeisgood4898
@lifeisgood4898 2 жыл бұрын
I wish yall could get TV attention world wide
@JackieD3924
@JackieD3924 2 жыл бұрын
Is this disease a result of vaccine injury? No disrespect intended. We just watched a documentary which addressed vaccine injuries becoming more prevalent beginning in 1989, predominantly in boys.
@HuntersHope
@HuntersHope 2 жыл бұрын
Hi Jacqueline! It is not. You can learn more about leukodystrophy on our website here: www.huntershope.org/family-care/leukodystrophies/ Thank you!
@jrpacer6355
@jrpacer6355 Жыл бұрын
Its genetic disorder
@elliesouza717
@elliesouza717 8 ай бұрын
That's ridiculous
@JackieD3924
@JackieD3924 2 жыл бұрын
God bless you all 💗
@missmoxie9188
@missmoxie9188 2 жыл бұрын
What a beautiful boy
@jamesmathai2253
@jamesmathai2253 2 жыл бұрын
Praise the Lord, God bless pastor john Burke 🙏🏻
@keithfrazier8586
@keithfrazier8586 2 жыл бұрын
Thanks for making this available. Totally enjoyed it. God bless!
@melissashanfield1028
@melissashanfield1028 2 жыл бұрын
Also those planning to have a kid can get genetics testing to see if you are a carrier for anything.
@elliesouza717
@elliesouza717 8 ай бұрын
And doesn't mean your child will have difficulties
@danettehartsock6366
@danettehartsock6366 2 жыл бұрын
God bless you all for working so hard to help babies!
@stepht7508
@stepht7508 2 жыл бұрын
I didn't realize that if diagnosed early enough there was treatment available for these children.My God,why aren't all newborns tested?This makes no sense 🤬
@HuntersHope
@HuntersHope 2 жыл бұрын
We agree! We will fight until every child is screened for Krabbe at birth... You can learn more on the NBS section of our website.
@annisjohnson844
@annisjohnson844 2 жыл бұрын
can thèse tests Bérard used To diagnose Tay Sachs disease in time to treat it?
@np100
@np100 2 жыл бұрын
Can parents be tested before they get pregnant?
@krystalbaker-clark
@krystalbaker-clark 2 жыл бұрын
At a time when someone might question their faith; they embraced it. You will be reunited with your child again!
@kellyleblanc183
@kellyleblanc183 2 жыл бұрын
Is there actually a Lorenzo's oil?
@cynthiablandford6213
@cynthiablandford6213 2 жыл бұрын
Always,always be grateful for your health.😔❤
@caporfact6205
@caporfact6205 3 жыл бұрын
I know a another KZbin er that that looks like your son that you just showed us on video it's called Sunshine baby
@franny5295
@franny5295 3 жыл бұрын
Dang, that's sad...
@maureenmilligan7882
@maureenmilligan7882 3 жыл бұрын
Is Dr. Keller originally from Perrysburg, NY?
@DippyHippie
@DippyHippie 3 жыл бұрын
These parents are hero’s!
@aprilrobinson3379
@aprilrobinson3379 3 жыл бұрын
Hi
@atishasutherland
@atishasutherland 3 жыл бұрын
#curemld please
@TrinketStarz
@TrinketStarz 3 жыл бұрын
Can Lorenzo's oil help? Did you know about Lorenzo's oil at the time? Grand misdiagnosis is a time waster. My son suffered for years before they finally pinned it down.
@astrinymris9953
@astrinymris9953 3 жыл бұрын
My understanding is that Lorenzo's Oil only helps half of the children who are started on it before symptoms manifest, meaning that you still need newborn screening. The bone marrow transplant seems like a more effective treatment. Either way, newborn screening is the key.
@jillneer7305
@jillneer7305 3 жыл бұрын
Today would have been my son's 34th birthday - he died in 1992 of MLD. To see that Hunter's Hope is available now, brings tears to my eyes! I'm so very happy that there is hope & help for leukodystrophy families now. ❤
@HuntersHope
@HuntersHope 3 жыл бұрын
Thank you so much for your kind words, Jill. We are thinking of you and your precious son on his birthday -- your family is in our prayers.
@angrajsingh9590
@angrajsingh9590 11 ай бұрын
Waheguru