AGSD Patient/Family/Medical Conference
Due to ongoing issues with COVID-19, The 2020 conference will be online on September 11 and 12.
The AGSD is excited to bring you the firsty-ever AGSD virtual conference!
New this year -- there are 2 scheduled sessions --
1. Friday 730pm Central Time: AGSD General Business meeting
By-law updates (members should have received links to the proposed bylaws, or a paper copy if you do not have an email on file with the AGSD back in May of 2020)
2. Saturday noon Central Time: farewell and tribute to David Weinstein
Everything else is available at your convenience after Friday morning.
You will be able to see the sessions and speakers when you register.
Registration is FREE thanks to our generous sponsors -- Ultrgenyx, Moderna, Vitaflo and APBD Foundation. Please consider making a donation to the general fund of the AGSD if you family is in a position to do so.
After you register, you will be sent a link that will give you access to all of the interactive content, some speakers will continue to be added through the end of October, but the free registration needs to be done by noon central on Friday, September 11th.
Registration can be completed at the following link:
Further instructions will follow in the coming days after registration is completed. There is a website where all of the content is hosted--included a scavenger hunt and puzzles for kids of all ages. We have a great line up of our GSD speakers as well as some new topics that have never before been presented. All of that is available after registration.
If you only want to attend the business meeting and no other sessions of the conference, please email firstname.lastname@example.org and Jessica Knepler will reach out to you with instructions.
Please send any questions at all to the email@example.com email address and we will help you.
2021 Conference Information
Due to going virtual for our 2020 Conference, we have simply moved the dates of our Cleveland conference to September 10 and 11, 2021. This will be held at the same location that was previously announced, Cleveland Airport Marriott, and hosted by Radhai Prabhakaran. Our goal is everything to be “back to normal” by then. Start gathering items for our silent auction, and gear up to gather once again with your GSD family and friends!
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.