Why do I fight? It’s been a fight from Day 1 almost 23 years ago.
#RareDiseaseDay #TuberousSclerosisComplex
#RareDiseaseDay #TuberousSclerosisComplex
February 28, 2026 at 6:20 AM
Why do I fight? It’s been a fight from Day 1 almost 23 years ago.
#RareDiseaseDay #TuberousSclerosisComplex
#RareDiseaseDay #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
If you haven’t, call 📱 202-224-3121 NOW. #DontMessWithMedicaid
#TuberousSclerosisComplex
May 14, 2025 at 3:01 AM
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
If you haven’t, call 📱 202-224-3121 NOW. #DontMessWithMedicaid
#TuberousSclerosisComplex
#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/...
#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/...
July 11, 2025 at 12:05 PM
#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/...
#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/...
TSC NZ committee member Tom Maling has been climbing for the cause! Find out more at givealittle.co.nz/fundraiser/s... #tuberoussclerosiscomplex
April 15, 2025 at 1:05 AM
TSC NZ committee member Tom Maling has been climbing for the cause! Find out more at givealittle.co.nz/fundraiser/s... #tuberoussclerosiscomplex
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
November 27, 2024 at 2:24 PM
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
Resonates with my lived experience as the adoptive parent of now adult children with complex medical needs. #caregiving #specialneeds #TuberousSclerosisComplex #Autism #epilepsy #alone
January 14, 2025 at 5:47 PM
Resonates with my lived experience as the adoptive parent of now adult children with complex medical needs. #caregiving #specialneeds #TuberousSclerosisComplex #Autism #epilepsy #alone
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
doi.org/10.1111/epi....
#epilepsy #ILAE #GFAP #Neuroinflammation #Tuberoussclerosiscomplex
January 24, 2025 at 5:56 PM
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
doi.org/10.1111/epi....
#epilepsy #ILAE #GFAP #Neuroinflammation #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
rdnz.nationbuilder.com/petition #raredisordersmonth #tuberoussclerosiscomplex
February 26, 2025 at 6:41 PM
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
rdnz.nationbuilder.com/petition #raredisordersmonth #tuberoussclerosiscomplex
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
February 28, 2025 at 6:10 PM
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
Call to action!!!! Content creator, Scotty K, is in need of help. Please watch this, follow, share/promote this. He Is time of need. I will promote his stream when the time is near. Let's help this man out!!
www.tiktok.com/t/ZP8Fh2HN9/
www.tiktok.com/t/ZP8Fh2HN9/
Please 🙏🏻 for her #watch #hope #charity #dnd #fallout #ttrpg #live #love #daughter #tsc #tuberoussclerosiscomplex #encouragement #engagement #please #dad #survive #give #life
TikTok video by scottykfitness
www.tiktok.com
January 7, 2025 at 7:04 PM
Call to action!!!! Content creator, Scotty K, is in need of help. Please watch this, follow, share/promote this. He Is time of need. I will promote his stream when the time is near. Let's help this man out!!
www.tiktok.com/t/ZP8Fh2HN9/
www.tiktok.com/t/ZP8Fh2HN9/
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
While in many cases these cause no major issues, regular ultrasounds are recommended. More information at TSC.org.nz #TuberousSclerosisComplex #WorldKidneyDay #raredisorders_nz
March 12, 2025 at 3:56 AM
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
While in many cases these cause no major issues, regular ultrasounds are recommended. More information at TSC.org.nz #TuberousSclerosisComplex #WorldKidneyDay #raredisorders_nz
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
January 2, 2025 at 1:43 AM
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
@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
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...
rdnz.nationbuilder.com
February 26, 2025 at 6:17 PM
@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
rdnz.nationbuilder.com/petition #raredisordersmonth #tuberoussclerosiscomplex
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
doi.org/10.1111/epi....
#epilepsy #epilepsia #ILAE #corticaldevelopment #focalcorticaldysplasia #HCNchannels #mTOR #tuberoussclerosiscomplex
July 6, 2025 at 5:11 PM
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
doi.org/10.1111/epi....
#epilepsy #epilepsia #ILAE #corticaldevelopment #focalcorticaldysplasia #HCNchannels #mTOR #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
doi.org/10.1111/epi....
#epilepsy #ilae #epilepsysurgery #functionalconnectivity #lesionnetworkmapping #tuberoussclerosiscomplex
March 17, 2025 at 2:54 PM
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
doi.org/10.1111/epi....
#epilepsy #ilae #epilepsysurgery #functionalconnectivity #lesionnetworkmapping #tuberoussclerosiscomplex
Hoping to connect with caregivers traveling down the long road of #raredisease. #TuberousSclerosisComplex See tscalliance.org
December 5, 2024 at 9:56 AM
Hoping to connect with caregivers traveling down the long road of #raredisease. #TuberousSclerosisComplex See tscalliance.org
www.epilepsy.org.NZ are looking for people to share their experiences. You can help by telling your story:
• What was one misconception you had about epilepsy before meeting someone who lives with it?
• How has knowing someone with epilepsy changed your perspective?
#tuberoussclerosiscomplex
• What was one misconception you had about epilepsy before meeting someone who lives with it?
• How has knowing someone with epilepsy changed your perspective?
#tuberoussclerosiscomplex
June 20, 2026 at 12:16 AM
www.epilepsy.org.NZ are looking for people to share their experiences. You can help by telling your story:
• What was one misconception you had about epilepsy before meeting someone who lives with it?
• How has knowing someone with epilepsy changed your perspective?
#tuberoussclerosiscomplex
• What was one misconception you had about epilepsy before meeting someone who lives with it?
• How has knowing someone with epilepsy changed your perspective?
#tuberoussclerosiscomplex
More great work for the #tuberoussclerosiscomplex community from #TANDconsortium More at tandconsortium.org/join-tandem-2/
April 14, 2026 at 5:04 AM
More great work for the #tuberoussclerosiscomplex community from #TANDconsortium More at tandconsortium.org/join-tandem-2/
Is #tuberoussclerosiscomplex a part of your life in Aotearoa New Zealand? Help Rare Disorders NZ help you
Raredisorders.org.NZ
Raredisorders.org.NZ
October 7, 2025 at 2:52 AM
Is #tuberoussclerosiscomplex a part of your life in Aotearoa New Zealand? Help Rare Disorders NZ help you
Raredisorders.org.NZ
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
October 6, 2025 at 1:37 AM
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
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
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
tsa.org.au
June 10, 2025 at 3:01 AM
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
Help #Love find a way:TSC Global Awareness Day May 15 See how you can help at TSC.org.nz #tuberoussclerosiscomplex #raredisease
May 10, 2025 at 5:01 AM
Help #Love find a way:TSC Global Awareness Day May 15 See how you can help at TSC.org.nz #tuberoussclerosiscomplex #raredisease