AGSD Patient/Family/Medical Conference
2019 conference will be in Houston Texas on September 20th and 21st, 2019.
The conference registration form is available here and online registration is available at: https://reg.planetReg.com/AGSD2019Conference
The Association for Glycogen Storage Disease holds a family/medical conference each year for those affected with GSD, their families, and medical professionals involved in treatment or research of any type of GSD. The focus of these conferences is meeting other people and families affected by GSD, gaining a better understanding of the GSDs and their implications, and learning about the latest research findings and upcoming studies.
Regardless of where you live, having a family member with a rare disease makes you feel isolated and so alone. Finding other families with a rare disease like GSD is such a god-send. It is such a great relief to meet others who REALLY understand what you are experiencing - because they are experiencing it too. That is what makes the AGSD Conferences so great - for the parents and the kids. The AGSD has provided this for families throughout the Americas: a group to find others who live 'life by the clock' of cornstarch doses, NG tubes, G-tubes, and feeding pumps; fitting clothing over those 'big tummys'; managing dietary restrictions; dealing with muscle pain & wasting, and excercise; and other issues too numerous to mention.
The AGSD Conference is a two day event and most people stay in the conference hotel to be close to each other. We try to move the conference sites around the country to be fair to all the members.
On Friday evening, we have a banquet where people meet and greet each other. There may be some speakers or another activity after the meal.
Saturday morning is filled with presentations from speakers on various topics related to GSD. We usually have a buffet lunch, followed by an afternoon of presentations and 'break-out groups'. A 'Question and Answer' session with a panel of professionals preceeds the closing of the meeting.
After the meeting ends, many of the conference attendees will participate in the AGSD Fun Run/Walk [1 mile...for fundraising].
The AGSD Conference costs include a registration fee and the meal costs for Friday dinner and Saturday lunch. The Saturday evening dinner and entertainment is provided free for all conference registrants.
The benefit of eating your meals with the group is the fellowship and chances for sharing with other families and medical professionals. The children are always thrilled and amazed to meet and play with other kids who have GSD too [or a sibling with GSD]. The banquet room for Friday night is available for several hours after the meal for people to talk and share. The Saturday lunch is usually squeezed in between speakers and breakout sessions, so it is very convenient to be able to eat right there with the group and not have to leave the hotel to get food.
The AGSD understands that having a family member with a rare medical condition is very difficult, so by gathering each year, we affirm and encourage each other, and form some great friendships.