Iris Mustich, MPH

@umich alum | #PublicHealth professional | #RareDisease patient advocate 🦓🧬 Views mine • RTs ≠ endorsements • @[email protected]

[Iris Mustich, MPH @IMustich]

I'm excited to be running the 2023 @nycmarathon for the @tscalliance! Help me support this incredible organization which strives to create a future where everyone with TSC can realize their full potential. #TeamTSC #HopeNoMatterHowComplex https://t.co/R7ABayT9p0

[TSC Alliance @tscalliance]

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: https://t.co/UOIV7jfdZX

[Iris Mustich, MPH @IMustich]

Happy TSC Global Awareness Day! Thank you @MayorEONeal for helping raise awareness of TSC in our community. @tscalliance

[TSC Alliance @tscalliance]

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: https://t.co/7PxMkL1F3c

#adulttopiccall

[Iris Mustich, MPH @IMustich]

To learn more about TSC and why I'm running @nycmarathon this year, give @tscalliance a follow and check out my #teamTSC fundraising page: https://t.co/R7ABayT9p0

[Iris Mustich, MPH @IMustich]

Thank you for sharing my story @WRAL! https://t.co/ulRQFOTVOS

[Iris Mustich, MPH @IMustich]

Shop @KendraScott today and tomorrow using the giveback code below and 20% of your purchase will go to @tscalliance! #stepforward4tsc #hopenomatterhowcomplex #kendrascott #kendragivesback

[Iris Mustich, MPH @IMustich]

Honored to be part of this conversation. Listen now! ⬇️

https://t.co/HWZ2fi9Hft #TSC #RareDisease #HopeNoMatterHowComplex

[TSC Alliance @tscalliance]

Check out the newest episode of TSC Now, where host Dan Klein speaks with Justine Ravindranath, Commercial Operations Manager @NobelpharmaUS, and Iris Mustich, an adult with TSC and TSC Alliance volunteer.

Listen now: https://t.co/xXtwjJBqHj

#tscnow

[Iris Mustich, MPH @IMustich]

Looking for a Mother's Day gift? Need a present for a new grad? Want to treat yourself? Stop by @KendraScott in Durham, NC, on April 22nd or shop online all day April 22nd and 23rd! Twenty percent of your purchase will go back to @tscalliance Stay tuned for more information.

[Iris Mustich, MPH @IMustich]

ICYMI, I'm running the 2023 @nycmarathon for the @tscalliance, and I'm officially a quarter of the way to my fundraising goal! Thank you to everyone who has donated so far. You can check out my first update here: https://t.co/GdCNhYMpDe

#TSC #HopeNoMatterHowComplex #marathoner

[Iris Mustich, MPH @IMustich]

I took the @TSCAlliance Constituent Survey—have you?
This survey plays a critical role in planning and priorities for the TSC Alliance and ensures that their efforts meet the community’s needs.
Survey: https://t.co/MXg0omZ4OM
#constituentsurvey #tscalliance #tsc

[Iris Mustich, MPH @IMustich]

TSCRP funds innovative, high-impact research & may lead to discoveries in epilepsy, autism, TBI, cancer, diabetes, Alzheimer's, and more. Thank you for meeting with us; we hope to receive your support! #March4TSCResearch @RepRichHudson @virginiafoxx @RepDavidRouzer @RepDanBishop

[Iris Mustich, MPH @IMustich]

This week was #RareDiseaseWeek on Capitol Hill. We met with 14 NC members of Congress to advocate for funding for the TSCRP, which has received broad bipartisan support and $113 million in funding since 2002. @CDMRP @SenThomTillis @AlmaforCongress @JeffJacksonNC @tscalliance

[Iris Mustich, MPH @IMustich]

🚨ATTN North Carolina voters! #NCPOL: The right to protest in NC is in jeopardy. Tell your NC representative to protect our constitutional right to protest by voting 'NO' on #HB40 https://t.co/hRLgaehHUP

[TSC Alliance @tscalliance]

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: https://t.co/8tXWzQn97Y

[TSC Alliance @tscalliance]

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:
https://t.co/yBF6bp8598

⁠

[TSC Alliance @tscalliance]

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: https://t.co/zbhuCt5oVE

[TSC Alliance @tscalliance]

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 @IMustich]

This opinion supports the dosing of Triumeq tablets and Triumeq dispersible tablets in children 14 kg and above and will increase access to child-friendly treatment formulations, helping close the treatment gap for children living with HIV.

[Iris Mustich, MPH @IMustich]

#IMPAACT2019 study news: CHMP of European Medicines Agency released a positive opinion for Triumeq PD—the first dispersible single dose tablet regimen containing DTG for children LWHIV! @IMPAACTNetwork @KMB_PharmD @JKiserPharmDPhD https://t.co/hJF34WwLw9