Why do I fight? It’s been a fight from Day 1 almost 23 years ago.

#RareDiseaseDay #TuberousSclerosisComplex

Is #tuberoussclerosiscomplex a part of your life in Aotearoa New Zealand? Help Rare Disorders NZ help you
Raredisorders.org.NZ

Congratulations Rylee Sayer on your #swimmingnz debut at the 2025 World Champs - including 2 finals! Read more about Rylee's #courage and #determination at www.waikatotimes.co.nz/nz-news/3607... #tuberoussclerosiscomplex #paraswimming

A cohort study of children with #TuberousSclerosisComplex compares cognitive, communication, adaptive function, and other conditions between those with and without #autism
onlinelibrary.wiley.com/doi/10.1111/...

#TuberousSclerosisComplex #PulmonaryArterialHypertension

#MatrixStiffness 25 kPa-induced loss of TSC2 in PA #SmoothMuscleCell➡️
⏫mTOR & #YAP/TAZ➡️
⏫PASMC proliferation & ECM deposit (➡️fibroblast proliferation)

SM22a+ SMC het KO🐭of Tsc2➡️PAH at 9-wk

#SciSignal 2022
www.science.org/doi/10.1126/...

Abnormal HCN4 channel expression is observed at both P21 and P28 in RhebS16H neurons.
doi.org/10.1111/epi....

#epilepsy #epilepsia #ILAE #corticaldevelopment #focalcorticaldysplasia #HCNchannels #mTOR #tuberoussclerosiscomplex

I can't get into this article.
My daughter takes rapamycin as Sirolimus to stop the growth of tumours as a result of Tuberous Sclerosis Complex.
There are no slimming effects.

#TuberousSclerosisComplex

Dr Denise Chan and Dr Clara Chung discuss mTOR inhibitor treatments in TSC - Tuberous Sclerosis Australia In this presentation Dr Denise Chan (Paediatric Neurologist) and Dr Clara Chung (Clinical Geneticist) from Sydney Children's Hospital discuss the use of mTOR

The link to the excellent #mTor inhibitor presentation by Doctors Chan and Chung from Sydney Children’s Hospital tsa.org.au/videos/dr-de... #tuberoussclerosiscomplex

Definitely not how we envisioned the week. Thank heavens for Medicaid and Medicare. We’d be lost without it.

If you haven’t, call 📱 202-224-3121 NOW. #DontMessWithMedicaid

#TuberousSclerosisComplex

Help #Love find a way:TSC Global Awareness Day May 15 See how you can help at TSC.org.nz #tuberoussclerosiscomplex #raredisease

See what we’re up to in our latest newsletter mailchi.mp/c6633fe27fa1...
#tuberoussclerosiscomplex #tscglobalawarenessday

TSC NZ committee member Tom Maling has been climbing for the cause! Find out more at givealittle.co.nz/fundraiser/s... #tuberoussclerosiscomplex

Key point: Lesion network mapping was used to determine association between network connectivity and outcomes following pediatric TSC epilepsy surgery.
doi.org/10.1111/epi....

#epilepsy #ilae #epilepsysurgery #functionalconnectivity #lesionnetworkmapping #tuberoussclerosiscomplex

Up to 80% of people with TSC will have tumours in their kidneys called AML's (angiomyolipomas).
While in many cases these cause no major issues, regular ultrasounds are recommended. More information at TSC.org.nz #TuberousSclerosisComplex #WorldKidneyDay #raredisorders_nz

Medicaid coverage is an incentive offered by Department of Social Services in the adoption of special needs children. This “benefit” enabled my family to adopt a child diagnosed with a rare disease. #TuberousSclerosisComplex

The Rare Disorders NZ petition needs your signature! We finally have a national Rare Disorders Strategy, now we need action to implement it. Please stand with the rare disorder community and sign the petition today at
rdnz.nationbuilder.com/petition #raredisordersmonth #tuberoussclerosiscomplex

Petition for a plan to implement the Rare Disorders Strategy Stand with the rare disorder community in demanding Te Whatu Ora urgently engage with Rare Disorders NZ and begin a plan to implement the Rare Disorders Strategy. Sign the petition today! People liv...

@raredisorders_nz petition needs your signature! We finally have a national Rare Disorders Strategy, now we need action to implement it. Please stand with the rare disorder community and sign the petition today at
rdnz.nationbuilder.com/petition #raredisordersmonth #tuberoussclerosiscomplex

Key point: Glial fibrillary acidic protein (GFAP) levels are elevated in people with tuberous sclerosis complex (pwTSC) harboring a TSC1 or TSC2 mutation.
doi.org/10.1111/epi....

#epilepsy #ILAE #GFAP #Neuroinflammation #Tuberoussclerosiscomplex

Resonates with my lived experience as the adoptive parent of now adult children with complex medical needs. #caregiving #specialneeds #TuberousSclerosisComplex #Autism #epilepsy #alone

I too am the parent of a now adult child with a rare genetic disorder. When we were going through the adoption process my husband’s company was switching insurance. The office was told that the company would be rejected if our child was included for coverage. #TuberousSclerosisComplex

Hoping to connect with caregivers traveling down the long road of #raredisease. #TuberousSclerosisComplex See tscalliance.org

Saying farewell to a delightful low key game I could play on my phone in the ER and waiting rooms while supporting an adult child with complex medical needs. New app drops on 12/3 (no farming, matching, finding). #AnimalCrossing #TuberousSclerosisComplex