Ask Kate! Therapy Development in NF

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Күн бұрын

In this video, Kate answers discusses therapy development in neurofibromatosis.
Do you have a question about neurofibromatosis? Ask Kate!
We hope you will consider joining Kate at the NF Forum Sept. 20-21 in San Francisco, CA! Find out more at:
www.ctf.org/get-involved/nf-f...
Kate Kelts, RN, BSN, is the Patient Support Coordinator for the Children's Tumor Foundation. Submit your question in the comments below, or email Kate at kkelts@ctf.org. Click here to subscribe, and click the bell so that you receive alerts when new videos are posted: kzfaq.info?s...
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Note that CTF is not a medical center, and we cannot give direct medical advice. This video series is for informational purposes only, and is not a replacement for diagnostic or medical care.
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.
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Пікірлер: 10

@071949 4 жыл бұрын

Hi Kate, Thanks for the update. I look forward to your September videos.

@paulbrown3820 4 жыл бұрын

The new drugs which are coming out are very exciting and hopefully will help a lot of people. I took part in some clinical trials in the UK (Last time be tried was 23 May 2010) to help reduce plexiform neurofibroma's but they didn't help me but did help a relation.

@katekeltsctf9274 4 жыл бұрын

Thank you Paul!

@sarahko3430 4 жыл бұрын

Hi Kate, I am wondering if there genetics on the passing to MPNST from parent to child. I am at least a 3rd gen with NF1, passed from my mother who also development MPNST. So I am wondering what are my risk of developing MPNST.

@katekeltsctf9274 4 жыл бұрын

Excellent question Sarah! I will look into this. Right now we know very little about what we called genotype/phenotype. This means that while we can do a genetic test that will tell us exactly what your mutation is, we do not know what that mutation means as far as your prognosis or how NF1 will impact your health. There are some exceptions, for example the discovery of the SPRED-1 mutation which we know results in a much more mild disease. Please feel free to email me directly to discuss further!

@ahmedanwer9916 4 жыл бұрын

hi kate , could you talk about how to manage itching resistant to antihistamincs oral or topical agents? is their a link between NF1 and insomnia if yes , does it has a different managment ? lastly is targeted therapy sirolimus has a rule in managing NF1? thank in advance

@katekeltsctf9274 4 жыл бұрын

Hello Ahmed, thank you for these great questions. Itching is a significant issue for many adults living with NF1, I think a video about that is a great idea. As for NF1 and insomnia I am not aware of any link that has been researched at this point, if you'd like to email me directly to discuss that I would be happy to do so. As for Sirolimus studies have shown that it does not cause any shrinking in Plexiform Neurofibromas (www.ncbi.nlm.nih.gov/pubmed/24851266), but perhaps a video on some of the therapies we've studied that have not proven to be effective treatments is a good idea. I will consider that!

@matthewwilliams4065 3 жыл бұрын

I'm 30miles away from John Hopkins and they refuse to treat me because I am only clinically diagnosed with NF because my parents died when I was young and so they can fill out the paperwork and its to expensive for me to get genetic testing. You can take 1 look at me and see I clearly have NF. I am being denied treatment because I am poor and my parents are dead, doesn't seem right if you ask me.

@childrenstumor 2 жыл бұрын

Matthew, sorry to hear that you are struggling. If you need help locating an NF specialist in your area, we encourage you to visit www.ctf.org/doctor or email our patient support coordinator directly at kkelts@ctf.org Thank you for visiting our KZfaq channel, we hope if offers some information.