Our Family Focused Newsletters
Our goal is to communicate the latest on the SYNGAP1 Science Frontiers and share the progress of our SYNGAP1 (MRD5) Natural History Study and Registry. The data we are providing to our researchers and clinicians is setting the stage for clinical trials and helping find new mechanisms (functions) of the SYNGAP1 protein. We invite you to join our Members Directory to keep up on the latest in SYNGAP1 clinical studies and current events and happenings in the SYNGAP1 Community.
Jojo DeBord - Family Advisory Board Chair
FAMILY ADVISORY COUNCIL GOALS
- Family Advisory Council with members of Bridge the Gap – SYNGAP ERF will provide guidance on how to improve patient/family engagement, experience, and organization initiatives.
- As part of this process, patients and families are invited to serve on our committees to ensure that the family point of view, perspective, and experience are not only heard but also integrated into the mission.
- Through unique perspectives, they give input on issues that impact care, ensuring that the next patient or family member’s journey is easier.
Bethany Aldecoa brings a passion around healthcare reform, education, and disability advocacy to the Parent Advisory Council for Bridge the Gap. Her 7-year-old daughter, Collete “Coco”, was diagnosed with Syngap1 in 2018. Being a parent of a child diagnosed wth Syngap1 has pushed Bethany to be the best advocate possible for her daughter, and she hopes to bring that perspective to the PAC.
Bethany resides in Pheonix, AZ with her husband Robert and their two children. She works as a Supply Chain Planner & Buyer for Corning Incorporated and holds her BA from Arizona State University.
Bethany and her family love to spend time traveling, cycling, enjoying music & searching for the world’s best donut.
Married to Mark with 3 kids, Andrew (25) Anna (22) and Tommy (18). Our 3rd angel was born on June 27, 2000. We knew there was something not quite right from birth, then when he wasn’t meeting milestones as our older children had and the search began right away. We’ve pulled out all the stops, treating every symptom as it surfaces and trying every intervention I could come across. And finally, in October of 2017, we had our diagnosis after an exhaustive search for 17 years… for all the challenges, seizures, and developmental/cognitive delays. It is through Bridge the Gap I have found my home and support. We are on our way! Never give up, never stop.
Erin Poirer is married to Andrew and they are the parents to two girls diagnosed with SYNGAP in January 2018. Their daughter’s names are Lily age 8 and Elise age 6. Erin stays at home with the girls and is involved in many special needs boards and committees.
Shane Norris is the father of Colby (9) who was diagnosed in 2017. He is married to his wonderful wife of almost 17 years Rebecca and they have two older daughters, Sydney (15) and Mia (12). Shane has been in the Insurance industry for over 18 years and in Human Resources for the past 10 years.
Candace Gross Taylor
Candace Taylor Gross is married to Kevin Gross we have two daughter’s Isabella almost 10 and Alana who is 7. Our first born Bella was diagnosed with Syngap here at Texas children’s in the medical center. Native Houstonians.
Brenda Weegman is an oncology RN at Regions Hospital in St Paul, MN. Her husband and she have three children; Hana (13), Bret (8), and Danika (6). They also have 2 dogs, 7 birds and a variety of fish tanks. Syngap1 is something she has lived with for 6 years, but only recently learned about when Danika was diagnosed in July, 2018. She is proud to represent Bridge the Gap as part of the Family Advisory Council and is excited to see what the future holds for us!