RDCA-DAP Scientific Director @CPathInstitute, patient advocate, neuroscientist, and proud mom. Opinions are my own.

Joined March 2017
47 Photos and videos
Heidi Grabenstatter retweeted
1 Oct 2024
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 family.
Epilepsy Foundation of America Statement on the Death of Rhyker Earl
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Today is the 10th anniversary of #LimbGirdleAwarenessDay, and it's my pleasure to announce @CPathInstitute's launch of a new Task Force uniting the trailblazing researchers, patient advocates, and industry partners determined to work together to overcome unmet needs of LGMDs.
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In a pre-competitive, neutral environment, the Task Force members are dedicated to advancing drug development tools through collaboration and data sharing to inform future clinical trials.
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Heidi Grabenstatter retweeted
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 humanity. With that in mind, do we have the courage to unconditionally love our neighbors, our so-called enemies, and love ourselves? “The more you are motivated by love, the more fearless and free your action will be.” Dalai Lama
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RT @RyansMom2: I'm the mom of a child with an incurable, catastrophic epileptic syndrome. If you are a researcher, doctor, or advocate, and…
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Heidi Grabenstatter retweeted
26 Jun 2024
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 and saw my son helpless and crying on the street watching the ambulance drive away with his sister inside. That was devastating. And tough. But so is he.
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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.18044 #epilepsy #ILAE #drugresistance #mechanisms #therapydiscovery #treatment @IlaeWeb @epilepsiajourn @WileyNeuro
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Heidi Grabenstatter retweeted
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
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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.
7 Apr 2024
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.
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Heidi Grabenstatter retweeted
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
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Heidi Grabenstatter retweeted
Congratulations Dr. Maurizio Giustetto, 2023 Million Dollar Bike Ride Awardee - cdkl5.com/blog/congratulatio… 🩷🩷🩷🩷🩷🩷

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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.squaresp…
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Heidi Grabenstatter retweeted
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
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Heidi Grabenstatter retweeted
💻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
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Heidi Grabenstatter retweeted
New online! Rare genetic brain disorders with overlapping neurological and psychiatric phenotypes go.nature.com/3sNkqnh
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Heidi Grabenstatter retweeted
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
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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.
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Heidi Grabenstatter retweeted
POV: Telling your parents you just won the @NobelPrize... @WeissmanLab
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Heidi Grabenstatter retweeted
Recognizing the winners of this year's Champion of Hope Awards. Congratulations! #WeekinRARE #ChampionsofHope #COH23 #GGSummit23 #GGSummit #GlobalGenes #CareAboutRARE
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