Resources and Support around Grief and Loss
Grief and loss are deeply personal and often difficult experiences—and no one is immune. At the request of the community, the NFXF is hosting a special webinar to explore this important topic with compassion and care.
Join our expert panel—Suzanne Aaron, Caitlin Arndt, CCLS, Arlen Gaines, PhD, MSW, LCSW-C, APHSW-C, and Margaret Gilbride, JD, CT—as they share insights, strategies, and resources to help individuals and families navigate grief in the context of Fragile X. This one-hour session will be a moderated Q&A, led by Hilary Rosselot, offering space for understanding, support, and healing.
Come prepared with your questions. You may also submit your questions in advance when completing your registration. We will do our best to answer as many questions as possible.
If you have additional questions, feel free to email us at contact@fragilex.org.
The webinar will be recorded and available to all registrants.
Learn More About the Panelists
Suzanne Aaron
Suzanne Aaron is an Information & Outreach Specialist with The Arc of Illinois. She specializes in disability advocacy and family support, emphasizing parent education.
Suzanne feels that when parents are educated about the resources and programs available to help them navigate the complex systems of health care, federal and state programs, and special education, they are empowered to create the best life possible for their loved one.
Suzanne is also the parent of a young adult with intellectual and developmental disabilities and autism, and has helped compile resources on grief for families after receiving requests from families navigating these difficult times.
Caitlin Arndt, CCLS
Caitlin has been a Certified Child Life Specialist working with children and their families for over 14 years. She spent most of her hospital career at Children’s Health Dallas supporting children and their families in oncology.
Currently, she is the Education & Outreach program coordinator at Fernside Center for Grieving Children. In this role, she gets to combine her passion for educating the community about grief and supporting grieving children and families.
Arlen Gaines, PhD, MSW, LCSW-C, APHSW-C
Dr. Arlen Gaines has been caring for individuals with serious illness and at the end of life for almost 20 years.
After years as a hospice social worker, she transitioned into leadership, focusing on leading psychosocial teams and elevating collaborative practice in hospice and palliative care. She developed a specialization in supporting individuals with developmental disabilities in their grief and speaks nationally on this subject.
She co-authored the award-winning I Have a Question series, which addresses complex topics for children, including those with developmental disabilities, such as I Have a Question about Death and I Have a Question about Cancer.
As the first social worker in the inaugural doctoral program in Palliative Care at the University of Maryland, Baltimore, she completed her dissertation research on the grief and bereavement experiences of children with intellectual disabilities. Learn more about Dr. Gaines’ work.
Margaret Gilbride, JD, CT
Margaret Gilbride is a faculty member and director at the Boggs Center on Disability and Human Development whose portfolio includes aging and grief & loss projects.
She graduated from Indiana University School of Law and is certified in supported employment, customized employment, person-centered planning, interfaith hospital chaplaincy, and death education.
She is a member of the NJ Action Team on Aging and Disability, the Special Interest Group on Aging for the Association of University Centers on Disability, the Overlook Medical Center’s Bioethics Committee, and the National Community of Practice on Bridging Aging and Disability.