Jane's Koselugo (Selumetinib) Success Story

Рет қаралды 9,195

4 жыл бұрын

This Children's Tumor Foundation story is about Jane, a young patient who started taking Koselugo (selumetinib), a MEK-inhibitor drug that proved to shrink, then stabilize the growth of her plexiform neurofibroma tumor. Jane was one of the first pediatric patients in a clinical trial at the National Institutes of Health, and her mother Kristina shares their six-year journey from clinical trial to FDA approval!
Join us in celebrating the first-ever FDA approved drug for the rare disease neurofibromatosis. To read more about Koselugo (selumetinib), including the CTF-funded research that informed this clinical trial, please go to: ctf.org/progress
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What is the Children's Tumor Foundation?
Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.
Visit our website at www.ctf.org/
Donate today at www.ctf.org/ways-to-give/
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Пікірлер: 51

@rachelquesada7185 4 жыл бұрын

I am so thrilled to hear this news!! Thank you for testing this medication!!!

@Tanguipeti Жыл бұрын

My son is about to start the treatment with Koselugo, we were explained about all potential side effects.. However, I would like to speak with a mom or an actual patient who has already gone thorough the process. I would appreciate if somebody from this chat would be able to chat with me for a few minutes. Thank you!

@chandanbehera3943 2 ай бұрын

Hii....is it works?

@qrdebele632 Жыл бұрын

I have NF 1 and my life is a disaster. The medicine is too expensive for me. But I'm glad it helps others.

@kcmagicgirl5516 2 жыл бұрын

Is this available for adults as well? I hope this is cure.

@sohamchavanvlogs4940 3 жыл бұрын

When will it available in India?

@ngs_creation96 3 жыл бұрын

Age of 24 girl also can use this tab for NF 1 treatment

@nkaiyanna 3 жыл бұрын

Can it be taken by Adult 40 years

@lili18ana93 3 жыл бұрын

So happy we finally have treatment !!

@user-dw4td1yb5b 3 жыл бұрын

Its true or not

@06eyM3 Жыл бұрын

IF you can afford it. It costs $400,000.00 in canada. And its not covered by provincial health care in any province.

@doomy1993 3 ай бұрын

@@06eyM3how long they have to take it ?

@lailahapper4512 3 жыл бұрын

I take that medicine for my nf1 on my leg

@tiffany4809 2 жыл бұрын

Is there any financial help for this? My sister struggles so much with this everyday. Her self confidence is completely defeated. This is all she talks about being the main reason why she isn't happy. It is 12k from what I've seen

@06eyM3 Жыл бұрын

$400,000cnd in canada.

@roan33 3 жыл бұрын

does this work for adults

@saulmendoza6495 3 жыл бұрын

same question. I write from Bolivia. As my country is one of the poorest in South America, We son'ta any information about it. Please Let me if is works for adults. thanks

@Mattewxx 3 жыл бұрын

@@saulmendoza6495 we hoping for the best 👌 getting it in Nigeria would be difficult though there is always a out... would be observing...

@barsozcan1446 4 жыл бұрын

I would like to buy this medicine for my brother he is 47 y.o and has this disease nf1 but we could not find this medicine in Turkey sadly

@user-dw4td1yb5b 3 жыл бұрын

I think its for children

@japongulu4275 2 жыл бұрын

Mahkeme yolu ile alınıyor ameliyat edilemeyen ve büyüyen pleksiformlarda kullanılıyor yetişkinde içebilir

@user-wp1xk7ey9i 2 жыл бұрын

@@japongulu4275 işe yarıyor mu ?

@japongulu4275 2 жыл бұрын

@@user-wp1xk7ey9i henüz ilaç gelmedi proflar güzel konuşuyor ilaç hakkında dilerseniz Türkiye neurofibromatozis sayfamız var İnstagramda orada doktorumuzun konuşması ve Nf Li bir çok kişi var

@user-wp1xk7ey9i 2 жыл бұрын

@@japongulu4275 bu ilaç hangi ülkede ?

@kalundepurity3162 2 жыл бұрын

Does it work for adults? How can we get it in kenya?

@thetribe6391 2 жыл бұрын

I wish we can get it in Kenya,this is very good news

@veronicachirinos6275 Жыл бұрын

Please i need Koselugo i have a son 3 years old he has NF1 🙌🏼

@autumnboykin6246 4 жыл бұрын

Will this help with the people who have the many fibromas on them?

@childrenstumor 4 жыл бұрын

Currently Koselugo is approved for the treatment of inoperable plexiform neurofibromas. You can follow further developments of this drug on other tumor types at ctf.org/mek.

@diyandassembling2907 2 жыл бұрын

My child is suffering from neurofibromatosis, type 1. Doctors are suggesting for surgery here in INDIA. The tumour is present at cervical and dorsal levels and also extension of neurofibromas into the axillary and deep cervical .The size of the tumor is 9 cm supero - inferiorly ,4.8 cm transversely,4.5 cm subclavian and axillary vessels. Please help me to save my child . Kindly guide us to take better decision regarding the surgery. Doctor has given us two weeks of time from 8-5-2022.

@shabsarsal 2 жыл бұрын

Where in india which doctor u see

@scotness 4 жыл бұрын

My question is will adults be able to take this?

@elizabethkimble6829 4 жыл бұрын

my son has NF1 he is 24 and we are going to talk to his doctor about this this is great

@MrAadamAbdulAlim 4 жыл бұрын

Yes they can, I am in the phase 2 trials. I am 40 ish and have been taking it for almost a year now. Yesterday FDA approved the for the drug for a regular sale. The adult clinical trial is still going on. I would say talk to your doctor first call your neurologist and see if they can get on the clinical trial at this time. If you live near NIH I could probably get some contact info as there are a lot of visitors in the first month. And if you live outside of the DC area may be hard to do.

@childrenstumor 4 жыл бұрын

Thanks Scot. And yes. You can read more about it here: www.ctf.org/first-drug-approved-for-nf

@dangdebayme6806 3 жыл бұрын

What is this treatment about? I am a NF1 patient too who is hoping that medicines will be discover.