@umich alum | #PublicHealth professional | #RareDisease patient advocate 🦓🧬 Views mine • RTs ≠ endorsements • @imustich@med-mastodon.com
New York, NY
Joined December 2011
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Iris Mustich, MPH retweeted
Join today and become a leader in your community!
The TSC Alliance is seeking highly motivated volunteers to help build and strengthen our TSC community.
Interested or have questions? Please contact Carly Kaye at [email protected].
Apply here: ow.ly/Lgrl50OUQsy
Iris Mustich, MPH retweeted
Join us for an Adult Topic Call on Wednesday, May 17, at 8 pm EST.
This call will focus on Palliative Care and feature guest speaker Katie Parker, FNP-BC, ACHPN,
Palliative Care Nurse Practitioner.
Register here: ow.ly/28P950OkuSe
#adulttopiccall
Iris Mustich, MPH retweeted
Have you heard about the TSC Navigator? It is an easy-to-use online tool that helps guide individuals and families through the complexities of TSC.
Click to learn more about the TSC Navigator resources: ow.ly/aEEp50MAqzV
Iris Mustich, MPH retweeted
Join us for an Adults with TSC Open Forum!
This open forum is a great opportunity to meet other adults with TSC, share your story and more!
The open forum will take place this Wednesday, January 18, at 8 pm Eastern Time.
Register using this link:
ow.ly/otNi50MsIHq
Iris Mustich, MPH retweeted
The TSC Alliance needs your input!
We are launching a comprehensive online Constituent Survey assessing what the organization is doing right and identifying things we can do better.
The survey takes about 15-20 minutes to complete.
Learn more: ow.ly/aHji50MpncZ
Iris Mustich, MPH retweeted
The House and Senate cleared an Omnibus Appropriations Act, which includes an appropriation of $8 million in fiscal year 2023 for the TSCRP.
This effort would not have been possible without the efforts of our volunteer advocates across the country. Thank you!
Iris Mustich, MPH retweeted
🚨 Infantile spasms are a medical emergency. Know the signs: jerking of the mid-section, dropping of the head, raising of the arms or wide-eyed blinks. Join the conversation with #ISAW2022
ow.ly/3sL550LgZUX
Iris Mustich, MPH retweeted
November is National Epilepsy Awareness Month! 💜 Why is NEAM important to you? Share in the comments and read more about the history of NEAM: bit.ly/3NmRc4w
Iris Mustich, MPH retweeted
November is National Epilepsy Awareness Month (#NEAM2022). The TSC Alliance joins other organizations across the country to raise awareness of epilepsy and advocate for more research to find better treatments for those affected.
Iris Mustich, MPH retweeted
Just had a Halloween nightmare that for-profit companies were determining what medical decisions were best for patients, even if it meant overriding the judgment of the doctors who know them personally, and ... oh no
Iris Mustich, MPH retweeted
Did you know that November is Epilepsy Awareness Month? Get ready to help us spread awareness around epilepsy and seizure action plans by reviewing our available resources here: bit.ly/3f9WFPm
#EpilepsyAwarenessMonth #SeizureActionPlan #EpilepsyResources
Iris Mustich, MPH retweeted
Today is #SUDEPActionDay2022. Follow @CureEpilepsy to learn more about Sudden Unexpected Death in Epilepsy (SUDEP) and how to mitigate risk.
In honor of #SUDEPActionDay2022 on October 19, a global event to raise awareness about #SuddenUnexpectedDeathInEpilepsy (SUDEP), we will be posting important information about #SUDEP throughout the week. Join us and learn more: cureepilepsy.org/sudep-actio…
#TalkSudepNow
Iris Mustich, MPH retweeted
In honor of #SUDEPActionDay2022, we are joining our partners to #StartTheSUDEPConvo with families and friends. Too many loved ones have been lost and it is important that we get the word out. Check out this campaign and be inspired: bit.ly/3S6Q85v
Iris Mustich, MPH retweeted
The @tscalliance is now accepting applications for Biosample Seed Grants to support research using blood, tissue, and/or cells, DNA, or RNA isolated from samples in the TSC Biosample Repository. The deadline is Friday, October 28, 2022.
Learn more: ow.ly/bvFp50KL4GE
Iris Mustich, MPH retweeted
1/2 It’s finally out: Check out the largest genetic screen of brain tissues from people with epilepsy to date. In line with previous work: lesional epilepsies are ultra❗️genetic 🧬. Details, here: academic.oup.com/brain/advan…
Iris Mustich, MPH retweeted
As a healthcare provider, it’s important to recognize that although we may view a normal or negative workup as a good thing, if a patient is still having symptoms, normal testing just means a lack of an answer.
Iris Mustich, MPH retweeted
We're aware that people are having trouble accessing the UCB medications: Vimpat, Briviact & Nayzilam. The product is available. If you or your patients need help locating or getting these medications, please contact UCB Cares for assistance at 844-599-2273 or [email protected].
Iris Mustich, MPH retweeted
Kudos to @Crayola Experience in Easton, PA for hosting Color the World Purple for #Epilepsy Awareness on 11/5! Many #RareDiseases cause seizures. Awareness of what they look like & what to do if you see someone experiencing one is critical. purpledayeveryday.org/events… #PAraredisease