BOARD OF DIRECTORS

All GRIN2B Foundation Board Members are unpaid volunteers. The goal of the Board is to work together to support our mission.

Liz Marfia-Ash, President
When Liz’s daughter, Lucy, was diagnosed with a GRIN2B variation in 2014, she was given a stack of scholarly neurological articles and case studies on others with GRIN2B, which might as well have been written in a foreign language. Frustrated by the lack of information for families, she vowed to never let that happen to anyone else. Inspired by the connections made in the GRIN2B Parent Support Group on Facebook, Liz wrote and published www.grin2b.com in 2017 as a way to help give families accessible information regarding GRIN2B. Later that same year, her journey into nonprofit work continued, and she founded and received 501c3 status for the GRIN2B Foundation. Understanding full well how lonely and overwhelming it is for families to deal with such a rare diagnosis, Liz is determined to be a voice of positivity in the GRIN2B community. She is very passionate about supporting both the well-being of families and working with the medical community to better understand and treat GRIN2B. Liz also serves on the PAG Advisory Board for Combined Brain and on the Simons Searchlight Community Advisory Committee.

In addition to her duties as President, Liz works as a Project Manager for a small marketing firm in Chicago. She loves Pilates, reading, writing, making lists and watching movies and Netflix. Her dream is to someday write a Children’s book. She lives in the Chicago suburbs with her husband and three children.

Read Liz’s Rare Leader profile from Global Genes.

While we search for someone to fill the vacancy in our Treasurer position, Liz will also act as our Interim Treasurer.

Donna Dunn, Vice President
When Donna’s son, Charlie, was first diagnosed in April 2014, the genetic counselor gave Donna a grim prognosis with little hope for the future. Feeling hopeless, Donna turned to social media to see if there were other children and families impacted by this mutation. Finding no groups, Donna started one herself, creating what is now the GRIN2B Parent Support Group. That group has now grown to include families across the globe and has created an important support network for families. Donna is committed to increasing the support for families and supporting research through her work as GRIN2B Foundation’s Vice President and as an Admin of the Parent Support Group on Facebook.

Donna lives in Alabama, USA, and is married with two sons, the youngest who carries a GRIN2B gene mutation. Donna works as a Nurse Practitioner in Maternal Fetal Medicine. She also is an Associate Professor and coordinates the Family Nurse Practitioner Program at a local university. She enjoys spending time with her family and has recently begun learning to sew.

Phil Ash, Board of Directors
When Phil’s daughter, Lucy, was diagnosed with a GRIN2B mutation in 2014, he and his wife, Liz, were discouraged by the overall lack of information and supports for families. Phil spent over a year with Liz collaborating on the website, www.grin2b.com. Phil is eager to increase research and awareness, but he is also passionate about increasing family outreach and support so no more GRIN2B families feel alone. In March of 2018, Phil launched his podcast – Celebrating Rare: The GRIN2B podcast, which is produced as a way to provide information, share personal stories and discuss questions with GRIN2B parents.

Phil is a high school teacher who lives in the northwest suburbs of Chicago with Liz and their three kids. In his free time, he plays guitar, golfs, waterskis, and has a good time!

Carole Quennessen, Secretary
Carole became involved in non-profit in a very personal way: her daughter, Emma, was diagnosed with a mutation on her GRIN2B gene in December of 2014 when she was 7. The diagnosis was unexpected as they had stopped hoping for answers to her developmental delays after an exhaustive first three years. As a member of the GRIN2B community and board member of the Foundation, she is committed to helping families and supporting further research relating to GRIN2B. Carole is also the chair of our Fundraising Committee. Please send all fundraising questions to her at fundraising@grin2b.com.

Carole works as an Engineer in Package Development for a large Beauty company in New York. She was born and raised in France, but has lived in New Jersey since 1986. She also has a teenaged son and is stepmother to two wonderful young women. Aside from caring for her children, her favorite hobbies include crafting, kayaking with the kids and riding motorcycles with her husband.

Brittaney Crider, Family Outreach Coordinator
Brittaney became involved with the GRIN2B Foundation after her daughter Natalie was diagnosed with a GRIN2B mutation in 2016. It was so comforting to her and her husband to finally have a group of people that understood all they had been through. As a board member, Brittaney is excited to help bring families together for support and support research about possible treatment options.

Brittaney is a 3rd grade teacher near Columbus, Ohio. She and her husband, Mike, have their daughter, Natalie, and a son, Mikie. When she isn’t busy chasing children around at work and home, she enjoys paddle boarding, hand lettering, and is trying to learn to play the guitar.

Lauren Hookings, Board of Directors
Lauren was quick to track down the GRIN2B Parent Support Group following her daughter’s official diagnosis in 2016 and was thrilled to connect with like minded parents. It really felt like she’d found her tribe after years of muddling through therapies and specialist appointments with her then 4 year old daughter, Sadie. Lauren is excited to support families across the globe as a board member of the GRIN2B Foundation.

Lauren lives in Adelaide, Australia with her husband and two daughters and works as a Reporting and CRM Analyst. She runs a weekly after school dance/disco for children of all abilities. She enjoys reading, musicals, podcasts, spreadsheets, cups of tea and Netflix.