Greetings GFPD families,
It is hard to believe that in less than three months many of us will be together in Washington DC at the 2017 GFPD Conference meeting in person for the first time and/or reuniting with friends who we haven't seen seen in two years or more. If you have not yet made a decision about this summer's conference, I hope that you will consider attending.
Our family has been blessed by attending the 2011, 2012, 2013, and 2015 conferences. I will admit, as excited as we were to attend the first conference we were also a bit apprehensive. At that time we had only met one other family impacted by PBD-ZSD in person, and although I had connected with so many people online I wasn't sure what it would be like to meet them in person.
The financial cost of attending conference was also something that we had to consider, but we were fortunate in finding the resources needed to help cover much of the cost. In addition to applying for grants from various agencies our family has also held fundraising events in the past years that have allowed for us to attend the conferences without worrying about the associated expenses. If you need help searching for potential sources of grants/funding to cover some or all of the cost of registration fees, transportation and/or lodging, please know that the GFPD is here to help.
Since Ethan's diagnosis in 2010, the GFPD has truly become a lifeline for our family. I am so thankful that we don't have to do this alone and that in the age of email and social media that we are easily able to connect with GFPD families around the world. However, there is simply nothing like meeting other families in person. There is something for everyone at conference, no matter where your family might be in the "journey" and childcare is available for the children (those impacted by a peroxisomal disorder and also typically developing siblings).
If you have not yet met another family impacted by PBD-ZSD, DBPD or ACOX in person, or it has been a while since you've had the opportunity to do so, please consider joining us at the 2017 Family & Scientific Conference this summer in Washington D.C. I don't think you will regret it. Please feel free to contact me by email, through Facebook, or by phone if you have any questions and/or concerns. I would love to talk to you.
Mom to Ethan, 6 years old (PBD-ZSD)
GFPD Support Group Coordinator