The GFPD Family & Scientific Conference is for everybody – families with living children with PBD, and those with children who have passed, plus their extended families, friends, and anyone who cares about a family affected by peroxisome biogenesis disorders. Programming at our conferences runs the gamut from panels with scientific researchers, clinicians, and educators; caregiver roundtables; sibling sessions; and group support for all families. I asked one bereaved mother of a child with PBD what brings her back to our conferences, even though her child is no longer living.
Raissa, thanks for helping paint a picture of what the conference means to you. What makes you come back to the GFPD conferences year after year?
The GFPD Conference is vital to our sanity as bereaved parents. The personal connection we feel with each family we meet face to face re-affirms for us that we are not alone in this journey. It is something that we look forward to every other year.
Are there parts of the conference that especially appeal to you or don’t appeal to you as a bereaved parent?
The GFPD is really great about making sure that the families who are attending have a variety of sessions that they may choose to attend. It is not restrictive and that helps a lot of attendees who already have mixed emotions as it is.
At each conference, we try to create an environment for families at all stages of the PBD journey to connect, reflect, and support each other. What is it like to spend time with other families, and potentially other children with PBD, at these events?
As we have said, the personal connection we feel when we meet these families helps us know that we are not alone. And getting to know these children affected with PBD helps heal our hearts as grieving parents because we feel that each affected child has a connection with our angel, Justin.
What would you say to other bereaved parents who are undecided about coming to the GFPD conference?
They definitely need to try attending at least one conference- we can guarantee that they will be back for the next one!