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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#endnf #nf1 #nf2 #nf2swn #swn #childrenstumor #neurofibromatosis #schwannomatosis #nervetumor #tumor

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!

@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 !!

@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

@roan33 3 жыл бұрын

does this work for adults

@barsozcan1446 3 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

@kalundepurity3162 2 жыл бұрын

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

@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?

@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.