Heidi Grabenstatter
@PatientIntv
RDCA-DAP Scientific Director @CPathInstitute, patient advocate, neuroscientist, and proud mom. Opinions are my own.
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This tragedy is exactly why law enforcement agencies and all first responders must have mandatory seizure response training. As a first responder myself, and seeing the body cam footage, it’s clear that this police response was irresponsible and criminal. My heart breaks for this…
Epilepsy Foundation of America Statement on the Death of Rhyker Earl
One week ago today, I had the opportunity to get "dressed up" in my tuxedo and received the Arthur Ashe ESPY Award for courage. It remains a sublime honor, given that Arthur Ashe exemplified courage as living with an open heart of humility, kindness, and generosity that united…
I'm the mom of a child with an incurable, catastrophic epileptic syndrome. If you are a researcher, doctor, or advocate, and someone on the internet is making you feel unwelcome in the disease area you are currently in, you are MOST WELCOME to come work on epilepsy. 1/
Here’s a real, raw #RareDiseaseTruth: the total mess and heartbreak of life with these diseases. It’s not all cute pictures and victories. During a scary 30 minutes sitting in the ambulance with our daughter, as the rig started driving us to the hospital, I looked out the window…
Failures may be the greatest teacher we neglect to study. Going further, perhaps we should share failed clinical trials with centralized and standardized methods to inform future studies.
Addressing the problems of treatment failure in epilepsy: You cannot fix what you do not understand doi.org/10.1111/epi.18… #epilepsy #ILAE #drugresistance #mechanisms #therapydiscovery #treatment @IlaeWeb @epilepsiajourn @WileyNeuro
Today is World CDKL5 Day 🌍💜 #CDKL5 deficiency disorder is a rare genetic 🧬 condition that includes early-onset #epilepsy & neurodevelopmental impairment that affects cognitive, motor, speech and visual function. Learn more at CDKL5.com 💜 #CDKL5Awareness
Some are blessed with unmistakable talent in their fields, others' best skill is the ability to pick themselves up, dig in, and take on unfamiliar territory after failing. Give me the less talented, unstoppable force as a teammate. They know how to win.
Confidence doesn't always come from believing in yourself today. It often stems from recalling the obstacles you overcame yesterday. A history of resilience can silence self-doubt. Challenges conquered are clues to hidden strengths. Past progress is proof of future potential.
Today, I am pleased to share more good news from the Biden Harris Administration for people with #disabilities - holding airlines accountable to people using wheelchairs! #disabilityinclusion
Congratulations Dr. Maurizio Giustetto, 2023 Million Dollar Bike Ride Awardee - cdkl5.com/blog/congratul… 🩷🩷🩷🩷🩷🩷
Congratulations @MaurizioGiuste1 lab! @CDKL5_IFCR and the #CDKL5 community look forward to the team's continued progress exploring extracellular vessicle-mediated cell-to-cell communication in CDD.
Congrats to the 2023 #MDBR grant awardees! Thirty-eight projects were funded with $2.4M raised for 31 #rarediseases. Thank you to our MDBR community for their fundraising & commitment to the cause. See the complete list of projects here: orphandiseasecenter.squarespace.com/mdbr-2023-gran…
Researchers at @TheCrick , @ucl & Merck have identified a potential treatment target for a genetic type of epilepsy incl CDKL5 deficiency disorder (CDD). They identified a calcium channel, Cav2.3, as a target. Merck & The Loulou Foundation funded crick.ac.uk/news-and-repor… the…
I am so excited about this new partnership between @LGS_Foundation @RareDiseases and @CPathInstitute. Thank you @US_FDA for funding this vital work to advance #LennoxGastautSyndrome research!
The @LGS_Foundation is one of two groups selected to start an IAMRARE registry and submit data to RDCA-DAP, a big step forward for #LennoxGastautSyndrome research! RDCA-DAP is a collaboration between NORD, @CPathInstitute and @US_FDA Learn about IAMRARE: bit.ly/46Nkykz
💻Free webinar opportunity: “Rare aware: What you need to know about Infantile Spasms.” Join the Epilepsy Foundation in partnership with the Rare Epilepsy Network for a webinar on Monday, December 11th at 1pm ET. 1/2
New online! Rare genetic brain disorders with overlapping neurological and psychiatric phenotypes go.nature.com/3sNkqnh
My husband, @ProfRyanRussell has been battling cancer for 17 months Today, we officially had to start hospice Our hearts are broken. Yet on his 41st birthday last week, I got to tell Ryan his dream came true- he officially is a published author ❤️ a.co/d/fodmKrd
This. And national societies granting achievement awards for similar individuals for their research accomplishments and mentorship. Wondering who they were mentoring while I was doing the research and not supported during career transition.
The @LGS_Foundation is one of two groups selected to start an IAMRARE registry and submit data to RDCA-DAP, a big step forward for #LennoxGastautSyndrome research! RDCA-DAP is a collaboration between NORD, @CPathInstitute and @US_FDA Learn about IAMRARE: bit.ly/46Nkykz
Recognizing the winners of this year's Champion of Hope Awards. Congratulations! #WeekinRARE #ChampionsofHope #COH23 #GGSummit23 #GGSummit #GlobalGenes #CareAboutRARE
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