Glut1 Deficiency Foundation
Research Ready Series
The Glut1 Deficiency Foundation is pleased to offer the Research Ready Series, a special project to build a strong, patient-centered research foundation and increase research literacy in our community.
goals of the series
- educate the community on the importance of patient-centered outcomes research
- increase research literacy and clinical trial readiness
- help ensure research is focused on the needs and priorities of patients
- strengthen relationships and form new partnerships and collaborations across all stakeholders
Saturday, March 23, 2024
Embassy Suites Philadelphia - Valley Forge
888 Chesterbrook Blvd
Wayne, Pennsylvania 19087
A room block has been reserved with a discounted rate of $159 nightly plus taxes.
- refrigerators and microwaves in each guest room
- free made to order buffet breakfast for hotel guests
- free happy hour social for hotel guests each evening
- indoor pool, fitness center, and free parking
- hotel discounts are available for 3/22 and 3/23 and may be extended for three days before and after based on availability
- registration closes March 16th!
Links to the discount hotel reservations will be provided in the confirmation email you'll receive once you complete registration.
more detailed agenda coming soon!
Saturday, March 23, 2024:
7:30 AM: registration opens
9:00 AM: opening and welcome
- Eric Marsh, MD, PhD Children's Hospital of Philadelphia
- Paige Vondren, SLP, Chef Children's Hospital of Philadelphia
12:00 PM: lunch provided
- research updates
- research fundamentals training
- social time
5:00 PM: closing
- Registration is free for Glut1 Deficiency patients.
- The registration fee is $25 per person for all others participants.
- Participants interested in stipends may apply during the registration process.
- Scholarship applications are available to cover registration fees when registration costs create a financial hardship.
- Registration closes March 16th!
A limited number of stipends are available, but participation will be open to as many who would like join from any of our stakeholder groups - patients, caregivers, clinicians, researchers, and industry partners - and a stipend is not necessary to take part.
Participation Stipends: $100 for successful completion of either in-person or virtual research fundamentals training
Travel Stipends: $400 for in-person participants requiring travel and hotel accommodations in order to participate
- An individual may receive both a participation and a travel stipend, but only one individual per family is eligible for a travel stipend.
- Travel stipends require staying at the Embassy Suites as part of the discount room block.
- Stipends will be paid upon the successful completion of the training and all related activities (pre-test, post-test, and survey).
- Participants may apply for stipends as part of the registration process.
- Stipends will be awarded based on order of registration/application.
- Participants will be notified of stipend status once they have been allocated and awarded.
- A waiting list will be used as needed in case anyone awarded stipends will not be able to complete the training.
- Individuals from any location are eligible.
- Stipends will be paid via check or PayPal.
- Child care will be provided at no additional cost to participants.
- All children participating must be registered in advance as part of the general registration process.
- Games, activities, and arts and crafts will be provided.
- Age groups: 0 to 3 years; 4 to 12 years; 13 years and up
This project is partially funded through a Patient- Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (#28926).
The Patient-Centered Outcomes Research Institute® (PCORI®) is an independent, nonprofit organization authorized by federal law in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.
The Glut1 Deficiency Foundation is grateful for this opportunity and for the support from PCORI for this project.