PVNH Support (@PVNHsupport) header
PVNH Support (@PVNHsupport) profile picture

PVNH Support

@PVNHsupport

International community for Periventricular Nodular Heterotopia(PVNH),GMH,SBH disorders. Unite.Educate.Research. Find a cure. #PVNH #FLNA #MarchOnPVNH @PVNHday

 Vancouver
pvnhsupport.com
Joined January 2012
  • Tweets752
  • Following1.3K
  • Followers454
149Media
Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)
#PeriventricularNodularHeterotopia (#PVNH) is a developmental brain disorder that causes learning disabilities and #seizures. This happens when nerve cells abnormally clump around the brain's ventricles.
1
3
135
Consistently taking your prescribed medication is crucial for managing seizures and maintaining your health. For many people, medications can also help achieve seizure control. Set a reminder, keep track of your doses, and prioritize your well-being. youtu.be/lL5Pw69OGGM
1
6
18
848
Grief can be isolating. If you have lost a loved one to an aortic dissection and want to connect with someone who understands what you are going through, you can contact us at [email protected]. #AortaSupporta #JohnRitterFoundation
Image from JohnRitterFoundation (@JohnRitterFdn)
7
1
30
4,243
Have questions about #Marfan, #VEDS, #LoeysDietz, or another related condition and how it is affected by #COVID_19? Hear answers from two of our experts from @HopkinsMedicine Enid Neptune, MD & Hal Dietz, MD tomorrow at 8 PM ET. Register & submit Qs: bit.ly/2ULLHlc
Text: LIVE Tuesday 3/31, Your Medical Questions answered: COVID-19 and Marfan and Related Conditions, March 31 - 8 pm ET

ALT Text: LIVE Tuesday 3/31, Your Medical Questions answered: COVID-19 and Marfan and Related Conditions, March 31 - 8 pm ET

5
45
Do you have questions about how the #coronavirus affects your #lunghealth? Ask away during our @teaminspire Ask the Expert March 23-27. bit.ly/2UvU97R
Image from American Lung Association (@LungAssociation)
9
7
Don’t miss the ATS Twitter chat Wednesday March 25 at 7pm ET. @kriscrothers @GrahamCarlos and @michaelnieder33 will be discussing #COVID19. Use #ATSchat to follow.
1
5
PVNH Support retweeted
BC Place (@bcplace) profile picture
BC Place@bcplace6 Aug 2016
BC Place will be lighting up PINK & YELLOW tomorrow in celebration of the 5th edition of World #PVNHDay @PVNHsupport
Image from BC Place (@bcplace)
1
4
1
5
‘Intro to Bioinformatics’ is our free course for health professionals: bit.ly/1TYIOUP #genomes100k
Image from Genomics Education (@genomicsedu)
2
20
12
Thanks everyone who helped us raise over $2000 for @PVNHsupport ! Shout out to @RedTruckBeer for the brews and prizes! Way to go peeps!
1
1
2
PVNH Support retweeted
Bitner_jank (@reeses68) profile picture
Bitner_jank@reeses687 Aug 2014
#PVNHDay more support from the family
Image from Bitner_jank (@reeses68)
1
1
Eating a burger for a good cause #PVNHDay
Image from Véronique St-Antoine (She/Her) (@VStAntoine)
1
1
PVNH Support retweeted
Gemma Hart (@gemaholly) profile picture
Gemma Hart@gemaholly7 Aug 2014
Replying to @PVNHsupport
@PVNHsupport @tonyhart81 Happy PVNH Day!!!
Image from Gemma Hart (@gemaholly)
1
1
PVNH Support retweeted
Bitner_jank (@reeses68) profile picture
Bitner_jank@reeses687 Aug 2014
Replying to @PVNHsupport
@PVNHsupport ...rocking my pink in support of myself and all the others with this rare disorder
Image from Bitner_jank (@reeses68)
1
1
PVNH Support retweeted
Bitner_jank (@reeses68) profile picture
Bitner_jank@reeses687 Aug 2014
Replying to @PVNHsupport
@PVNHsupport my cousin proudly wearing her colors in support.
Image from Bitner_jank (@reeses68)
1
1
PVNH Support retweeted
cerys (@ceryssavagex) profile picture
cerys@ceryssavagex7 Aug 2014
Today is PVNH awareness day, PVNH bilateral symmetrical is the brain condition my baby sis/bestfriend… instagram.com/p/rZQZjvhu7k/
1
3
3
RT @BCEpilepsy Aug 7th is World #PVNHday! Some kids w/PVNH also have severe epilepsy. Learn more here: pvnhsupport.com @PVNHsupport
1
1
Happy BC Day! Hope everyone is having a safe and happy weekend. Get in here today for holiday brunch and a 1516 for @PVNHsupport!
1
1
It's on! Who's joining me for @Okanaganspring 1516 @RegalBeagleKits for #PVNHresearch??
Image from Yolaine Dupont (@vangroovymom)
1
PVNH Support retweeted
Yolaine Dupont (@Yo_Mktg) profile picture
Yolaine Dupont@Yo_Mktg9 Jul 2014
The 5th #TourismCupInvitational fundraiser n memory of Ella is this Friday! Join us at UBC Father Bauer at 515 & @RegalBeagleKits at 730pm
3
1
PVNH Support retweeted
NGRLive (@NGRLive) profile picture
NGRLive@NGRLive7 Jun 2014
Press Alert: Germline mosaicism in X-linked periventricular nodular heterotopia ... bit.ly/1kTIHaq
1
Load more