Dear parents and families:
As President of the Board, I, like the rest of the Board, as well as the medical research community, are deeply interested in your needs and desires. We are all faced with more unanswered questions than we could ever imagine. I share many of them!
Our purpose in presenting this years’ conference is to help educate you, us, our parents in the research that is directed at helping our children. Please keep in mind that the PURA Syndrome Global Research Network (PURA GRN) is in the early stages of their work, and are so far, exceedingly generous with their time, patiently waiting on grants to fund additional work. The research that is expected to be presented on Saturday of the conference is technical. At the same time, this will also be incredibly personal for each and every one of us: we will all read into the research our own children, our own hopes, our own fears. So we would like to recommend careful consideration if you are thinking about bringing your children to the presentations.
As such we are working to provide care for our family members, our children, should you be considering bring them to Philadelphia. Being that presentation content on the Saturday is medical, it may not be appropriate for children. The medical presentations will take a great deal of concentration and patience from each of us to best absorb and understand what is being presented. Personally, I'm a little intimidated already!
With that in mind, we, the foundation, have been working with this incredibly talented and passionate group of researchers in order to have some of them present portions of their work to date at the conference. We are working with the researchers and their schedules to have some social time with us at the conference this year in Philadelphia, likely over the course of a meal.
Sunday’s agenda will be more focused on us, our families and the mutual support we can provide one-another. More than a social, but not as technical as research! I’m very much looking forward to seeing many of you and spending at least some time with as many of you as I can!
I’m sorry to say that this year we are not expecting specific, one on one medical consultation with parents. However, we are working with the PURA GRN to advance a medical registry to further our advocacy and their research. We are also working to support you, our parents, with discussion points to bring to your child’s personal medical team: questions to ask, ideas to present, conditions to monitor and be aware of. And we are already discussing the possibility of future clinical outreach programs, albeit very early in discussions.
My point in this note is to encourage you to come meet with all of us in Philadelphia this June. You will have many opportunities to listen and learn about the current research, and hopefully have some social time with some of the PURA GRN, knowing that there is more to come!
At the same time I want to make sure your expectations are appropriate in that your child’s own medical doctors and you, the parents, are the primary care givers to your children. AND, that your comments here and elsewhere on POPs and PURAsyndrome.org are read, taken in, considered, and listened to, especially as we go forward trying to support you, us, the parents and families of PURA syndrome.
I welcome your comments, questions, and thoughts about this, the conference this summer or any other topic as it relates to PURA syndrome and the PURA Syndrome Foundation. Do not hesitate to e-mail me at: email@example.com