Heidi Grabenstatter

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

[Heidi Grabenstatter @PatientIntv]

@currentClamp Congratulations, Brennan!

[Luke Rosen @lukebrosen]

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.

[Heidi Grabenstatter @PatientIntv]

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.

[Heidi Grabenstatter @PatientIntv]

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.

[Critical Path Institute (C-Path) @CPathInstitute]

C-Path to lead Task Force on #limbgirdle #musculardystrophy. Details: https://t.co/BQUJB9H8at

[Steve Gleason - "Live Impossible" @SteveGleason]

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

[Danielle Reinhart @RyansMom2]

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/

[Luke Rosen @lukebrosen]

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.

[Heidi Grabenstatter @PatientIntv]

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.

[Epilepsia @EpilepsiaJourn]

Addressing the problems of treatment failure in epilepsy: You cannot fix what you do not understand
https://t.co/KUuYkWbMfk

#epilepsy #ILAE #drugresistance #mechanisms #therapydiscovery #treatment @IlaeWeb @epilepsiajourn @WileyNeuro

[Rikke S. Møller @FiladelfiaGene1]

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 https://t.co/ZZt8A5qCOb 💜

#CDKL5Awareness

[Heidi Grabenstatter @PatientIntv]

@mary_overfield Mary, I am so sorry to learn of this devastating loss. Sending you and your family my love and deepest condolences.

[Heidi Grabenstatter @PatientIntv]

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.

[Adam Grant @AdamMGrant]

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.

[Tony Coelho @HonTonyCoelho]

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

[Maurizio Giustetto @MaurizioGiuste1]

Congratulations Dr. Maurizio Giustetto, 2023 Million Dollar Bike Ride Awardee - https://t.co/1NyZLohRF7 🩷🩷🩷🩷🩷🩷

[Heidi Grabenstatter @PatientIntv]

@Phelan_McDermid released 2024 funding opportunities today. RFAs include: Innovator Award for young investigators, Translational Research Award, and the Shannon O’Boyle Memorial Grant to explore neuropsychiatric illness. LOIs due 3/1. Find more info here: https://t.co/XX3pblOFjP

[Heidi Grabenstatter @PatientIntv]

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.

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

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: https://t.co/1NiDc6pbzH

[Pearl Freier @PearlF]

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 https://t.co/P8nOFU1gOu the research

[Tracy Dixon-Salazar @TracyDixonSalaz]

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!

[CDKL5 - IFCR @CDKL5_IFCR]

💻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

[Nat Rev Neurology @NatRevNeurol]

New online! Rare genetic brain disorders with overlapping neurological and psychiatric phenotypes https://t.co/xom0uvcoJV

[Samantha Russell 👩🏼‍💻 @SamanthaTwenty]

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 ❤️

https://t.co/R9LuCxWTan