📢🎉Yesterday, DEE-P & @RareEpilepsy held a DEE Patient Listening session with the @US_FDA. Families from 7 DEE communities shared similar concerns: refractory seizures & challenges with communication, motor skills, sleep, hypotonia, behaviors, CVI, pulmonary issues & more.

Learn more about DEEs and the work of The Inchstone Project to develop/adapt outcome assessments to measure the small but meaningful change in those profoundly impacted by diseases.

@FamilieSCN2A @SCN8AAlliance @KCNT1_Epilepsy @CDKL5_IFCR @Foxg1Research #CRELD1 #LGS #KleefstraSyndrome.

Funding support from @LongboardP & @Neurocrine allowed us to bring in the incredible team from Canary Advisors & Science2People to help us prepare, execute & document the session so seamlessly. Continue to follow - we will share more from this meeting! #biotech #clinicalresearch.

We are grateful to the caregivers who were willing to so openly share their stories as well as the FDA for listening to the challenges, needs and priorities of the DEE/NDD community. This was a powerful step fwd in the conversation about QoL and meaningful change for DEEs/NDDs.

Jenny Downs from @TheKids_AU shared data from The Inchstone Project on the limitations of existing COAs unable to measure small but meaningful changes in those w/ profound impairments as well as abilities, priorities & unmet needs of the DEEs from a recent caregiver survey.

Part of the conversation focused on what matters most to families in the context of clinical trials and Megan Wright, mom to Lexi who lives with KCNT1 epilepsy shared what many of us believe “No improvement would be too small.”.

Join us for a conversation about a promising clinical trial model to accelerate access to the wider community of #DEEs - basket trials - with @LongboardP .Register: 4/29 @ 3:30ET

More on our recent DEE survey and the power of sharing! .#DEEs #awareness #community #share

Thank to you to everyone who helped prepare, attended and participated in this week's update from the Inchstone Project! There is so much left to do, but we are making progress. Thank you for walking on this journey with us.

More on Purple Day. 🟣.#epilepsy #awareness #DEEs

Every March 26 is Purple Day, the international day for epilepsy. It is a day to raise awareness, support related causes and share information. One of the most common actions is to wear purple. If you are wearing purple today we'd love to see it in the comments! #purpleday

Today the Inchstone Project Research Team will provide an important update on our efforts to create a range of assessment tools to better track progress for our loves ones. Please join us! .

Tomorrow the Inchstone Project will share an update on the massive data collected via our recent DEE Parents Speak survey and explain how we are working as a global collaborative to ensure that every inchstone (not milestone) of progress can be tracked.

There are a number of efforts underway to improve communication about and prevention of SUDEP. This second webinar on SUDEP explores how some advocates are working to improve communication with families about SUDEP and prevent future cases of SUDEP. #sudep.

March 26 is Purple Day, the international day for epilepsy. Are you planning on wearing purple or have related activities that day?

In one week the Inchstone Project Research Team will provide an important update. That will include creating assessment tools to better measure progress in our loved ones, as well as the data collected from our DEE Parents Speak survey! #DEEs #metrics.

What do we know about SUDEP? What don’t we know? What is the state of the research?.This webinar, the first in a series, helps answer those questions, and more, with three participating experts.

For those who have trouble leaving the house with medically fragile children, telehealth has emerged as an incredible resource. That picked up in the COVID pandemic. Our past webinar focuses on telehealth, considerations and potential benefits. #telehealth.

On March 25, 6 to 7:30pm EST please join The Inchstone Project Research Team for an update on the progress of our efforts to create a range of assessment tools that can accurately measure progress in our loved ones. #DEEs #metrics #inchstone .