SYNGAP1 - Awareness, Advocacy, Education & Research

BTG - Family Advisory Council

Karen Altobello, Chair
Family Advisory Council

Karen Altobello, 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, when 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.

Family Advisory Council Members

Martha Giblin

Michele Giblin lives in the Republic of Ireland with her husband and three children.

Her youngest daughter was diagnosed with Syngap1 in 2016 when she was 6 years old.

Michele is building awareness for Syngap1 in her home country, and works to the motto ‘Think Wide, Collaborate and Connect’. There is much to be gained in sharing and working together, and she is pleased to be part of the Family Advisory Council.

Jasmine Hall

My name is Jasmine Hall and I am married to my best friend and a mother to two beautiful boys.

My oldest son was diagnosed with SYNGAP1 at sixteen months old. That's when our entire world shifted and the search for answers began.

However, I love sharing our experience with our son'd rare genetic disorder, because it brings awareness to the disease.

Shane Norris

Shane Norris is the father of Colby (9 years old), who was diagnosed with SYNGAP1 in 2017.

He is married to his wonderful wife of almost 17 years, Rebecca and they have two older daughters, Syndey (15) and Mia (12).

Shane has been in the insurance industry for 18 years and in Human Resources the past 10 years.

Candice Gross Taylor

I'm Candice Taylor Gross, am married to Kevin Gross and we have two daughters, Isabella (Bella, almost 10 years) and Alana, age 7 years.

Our first born Bella was diagnosed with SYNGAP1, in Houston at Texas Children's Hospital, SYNGAP1 Center of Excellence.

We are native Houstonians.

Melanie Battye

I'm Melanie Battye and I am mum to Saskia who has a diagnosis of Syngap1.

Saskia was one of the first three children diagnosed in 2012 from the DDD (Dysphering Developmental Delay) study in the UK.

To be told in 2012 that you are one of only 3 children in the UK and one of 16 in the world, was quite an isolating prospect.

If you look at the SYNGAP1 journey over the last 7 years, you can truly see how far as a community we have come and when you look at that, then ask yourself where we will be within the next 7 years...

I am excited to embark on this journey/chapter of my life with BTG and help represent the families of the UK.

I look forward to help raising awareness and promoting SYNGAP1, raising funds for the UK research team and families, while also uniting the families of SYNGAP1 with social activities so that it reduces their feelings of isolation.This is some text inside of a div block.

Brenda Weegman

Brenda Weegman is an Oncology RN at Regions Hospital in St. Paul, Minnesota. Brenda and her husband 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 that she and her family have lived with for the past 6 years, but only learned about it when when Danika was diagnosed in July 2018.

Brenda is proud to represent Bridge the Gap as part of the Family Advisory Council and is excited to see what the future holds!

BTG - Family Advisory Council

Family Advisory Council Members

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