DEE_Pconnection Profile Banner
DEE-P Connections Profile
DEE-P Connections

@DEE_Pconnection

Followers
732
Following
2K
Media
162
Statuses
1K

Connecting families with severe developmental & epileptic encephalopathies to information, resources and each other

Joined December 2019
Don't wanna be here? Send us removal request.
@DEE_Pconnection
DEE-P Connections
8 months
📢🎉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.
1
1
2
@DEE_Pconnection
DEE-P Connections
8 months
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.
deepconnections.net
DEE-P Connections is working to advance the development of outcome measures for those severely affected by developmental epileptic encephalopathies (DEEs).
0
0
2
@DEE_Pconnection
DEE-P Connections
8 months
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.
1
0
2
@DEE_Pconnection
DEE-P Connections
8 months
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.
1
0
1
@DEE_Pconnection
DEE-P Connections
8 months
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.
1
0
1
@DEE_Pconnection
DEE-P Connections
8 months
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.”.
1
0
1
@DEE_Pconnection
DEE-P Connections
1 year
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
Tweet media one
0
1
2
@DEE_Pconnection
DEE-P Connections
1 year
More on our recent DEE survey and the power of sharing! .#DEEs #awareness #community #share
Tweet media one
Tweet media two
0
0
2
@DEE_Pconnection
DEE-P Connections
1 year
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.
Tweet media one
0
0
3
@DEE_Pconnection
DEE-P Connections
1 year
More on Purple Day. 🟣.#epilepsy #awareness #DEEs
Tweet media one
Tweet media two
Tweet media three
Tweet media four
0
0
2
@DEE_Pconnection
DEE-P Connections
1 year
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
Tweet media one
0
0
2
@DEE_Pconnection
DEE-P Connections
1 year
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! .
deepconnections.net
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…
0
0
0
@DEE_Pconnection
DEE-P Connections
1 year
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.
deepconnections.net
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…
0
0
4
@DEE_Pconnection
DEE-P Connections
1 year
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.
deepconnections.net
DEE-P Information Resource Center - This webinar explores how advocates are improving communication about and prevention of SUDEP.
0
0
0
@DEE_Pconnection
DEE-P Connections
1 year
March 26 is Purple Day, the international day for epilepsy. Are you planning on wearing purple or have related activities that day?
Tweet media one
0
0
0
@DEE_Pconnection
DEE-P Connections
1 year
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.
deepconnections.net
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…
0
1
0
@DEE_Pconnection
DEE-P Connections
1 year
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.
deepconnections.net
DEE-P Information Resource Center - What do we know about SUDEP? What don’t we know? This webinar helps answer those questions, and more!
0
1
3
@DEE_Pconnection
DEE-P Connections
1 year
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.
deepconnections.net
DEE-P Information Resource Center - In this webinar, we hear about how telehealth has been a great resource for DEE families.
0
0
0
@DEE_Pconnection
DEE-P Connections
1 year
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 .
deepconnections.net
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…
0
0
2