SMA News Today Forums | daria-lavrovska | Activity https://smanewstoday.com/forums/members/daria/activity/ Activity feed for daria-lavrovska. Tue, 21 Apr 2026 18:28:41 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 d958fcfe5283cd8671276401fbb1e120 daria-lavrovska replied to the discussion Key Differences Between Spinraza and ZOLGENSMA in the forum Zolgensma (onasemnogene abeparvovec) https://smanewstoday.com/forums/forums/topic/key-differences-between-spinraza-and-zolgensma/#post-19418 Mon, 17 Jun 2019 19:20:28 -0500 Reply to Key Differences Between Spinraza and ZOLGENSMA

Thanks, Michael!

]]> 2e5cd9eddaf4402d7b5136db215f561f daria-lavrovska replied to the discussion Key Differences Between Spinraza and ZOLGENSMA in the forum Zolgensma (onasemnogene abeparvovec) https://smanewstoday.com/forums/forums/topic/key-differences-between-spinraza-and-zolgensma/#post-19413 Mon, 17 Jun 2019 18:04:41 -0500 Reply to Key Differences Between Spinraza and ZOLGENSMA

Hi everyone!

I don’t know, if  it’s a proper topic for my question, so sorry in advance in case it is not.

I was said, there were several cases in the USA, when an insurance company  covered Spinraza treatment and Zolgensma simultaneously (i.e, patient gets both: Zolgensma as one time treatment and Spinraza constantly).

It sounds a bit weird… Read more

]]> ec6854dc3b8e976655141942efc3f8f9 daria-lavrovska replied to the discussion Talking To Your Child About Spinal Fusion Surgery in the forum Parents​ ​and​ ​Caregivers​ https://smanewstoday.com/forums/forums/topic/talking-to-your-child-about-spinal-fusion-surgery/#post-18253 Wed, 10 Apr 2019 00:32:52 -0500 Reply to Talking To Your Child About Spinal Fusion Surgery

Thanks for the answers!

]]> 32835e9aa002aa6b2170b45e229feab7 daria-lavrovska replied to the discussion Talking To Your Child About Spinal Fusion Surgery in the forum Parents​ ​and​ ​Caregivers​ https://smanewstoday.com/forums/forums/topic/talking-to-your-child-about-spinal-fusion-surgery/#post-18172 Fri, 05 Apr 2019 04:29:26 -0500 Reply to Talking To Your Child About Spinal Fusion Surgery

Hi everyone!

My son had the surgery 3 weeks ago. Its duration was 12 hours, and it passed luckily without complications. Now he takes pain killers, however, I wouldn’t say, he experienced so strong pain, as I could imagine reading your stories.

A quick question: you were under your teens when you had the surgery. So I assume, you all had… Read more

]]> 7d0b96714e2150a34a398b05f68ba6bc daria-lavrovska replied to the discussion Government Shutdown May Delay FDA Approval of Zolgensma in the forum Adults ​With​ ​SMA https://smanewstoday.com/forums/forums/topic/government-shutdown-may-delay-fda-approval-of-zolgensma/#post-16481 Thu, 10 Jan 2019 15:09:49 -0600 Reply to Government Shutdown May Delay FDA Approval of Zolgensma

<p style=”text-align: left;”>Hi, I can’t read the article – access is denied.</p>
Could anyone post it here or send it to me per email? Thx!

 

]]> adb5cba2a785e0f302823607ea58e1e8 daria-lavrovska joined the group Research and Development https://smanewstoday.com/forums/activity/p/2924/ Thu, 04 Oct 2018 14:16:02 -0500 0 0f99878a9a01f798948ee28992bed81b daria-lavrovska replied to the discussion Spinraza Delivery Methods in the forum Spinraza (nusinersen) https://smanewstoday.com/forums/forums/topic/spinraza-delivery-methods/#post-13913 Mon, 03 Sep 2018 20:08:27 -0500 Reply to Spinraza Delivery Methods

@Kevin, thanks for clarifications.

This week we have the 6th injection and I’m going to discuss this option with our pediatrician. Just to know, if it could be a case for us in the future.

]]> 6add6b37a452c37c42fb136036f83438 daria-lavrovska replied to the discussion Spinraza Delivery Methods in the forum Spinraza (nusinersen) https://smanewstoday.com/forums/forums/topic/spinraza-delivery-methods/#post-13903 Mon, 03 Sep 2018 14:29:17 -0500 Reply to Spinraza Delivery Methods

Hi everyone!

My 12-yaer-old son (SMA type 2) is in need of surgical operation (because of scoliosis).

As he gets Spinraza, a surgeon advised 2 approaches: either he lefts a “window” in a metal construction, or  he implants additionally this SIC system in order to deliver the drug. Nobody told us about an option with injections in… Read more

]]> 04de43c5fdd6b68e53593a68159d495e daria-lavrovska became a registered member https://smanewstoday.com/forums/activity/p/2477/ Mon, 03 Sep 2018 13:54:57 -0500 1