Association for Glycogen Storage Disease

GLYCOGEN STORAGE DISEASE AWARENESS WEEK

Each October, the AGSD encourages it members and partners to participate in an Awareness Week. October 2024 dates and information is forthcoming. Below is information from the 2023 Event.

AGSD will post graphics daily leading up to awareness week—share them and share your story. Make sure you tag Association of Glycogen Storage Disease in your post. The goal is to spread awareness and education.

Your stories are powerful and important. With so many different types of GSD and so many different diagnoses, we can all learn from each other.

Make sure you report on any events and activities you have organized for AGSD Awareness Week, using this email info@agsdus.org or posting to the AGSD Facebook page. We will be promoting them on social media. Email info@agsdus.org with info.

GSD Facts Social Pictures

Hashtags - Please use the hashtags #AGSD and #GSDAwareness #GSDStrong #GSDBrave

Add an Awareness Week Frame to your Facebook profile for the week. - Help spread awareness by updating your profile picture! If you would like a Profile picture made please send a message through Facebook to our AGSD FB page along with your picture and what you would like it to say.

Awareness Week Plan

Participate in anyway your family sees fit! Pick one day, pick all the days---do what works for you!

Sunday

· Change your social media profile. Use one of the profile frames above.
· Host a CORNSTARCH CHALLENGE—have friend measure and mix cornstarch and see how fast they can drink it—if they don’t want to challenge, then ask them to donate to AGSD instead! (****think ICEBUCKET Challenge…..) AGSD is part of Network for Good—so Facebook fundraisers come to us. Donations can also be made via our website.
· Do the "six second rule challenge". In the 101 Tips for a good life with McArdle disease they explain the six second rule. Have your friends and family complete a vigorous physical activity.... but this time they only six seconds to complete it before needing to take a break. If they take too long, don't take a long break in between or find the experience frustrating have them make a donation to the AGSD.

Monday

· Share your Story. How did your diagnostic journey happen? What does life in your family look like with GSD? Whether you’re a patient, caregiver, or researcher, spread awareness by sharing your GSD story. #GSDStrong

Tuesday

· Watch the AGSD Facebook feeds and share a Fact Graphic
· Help AGSD celebrate GSD Awareness week! Set up a Facebook Fundraiser or send a donation through our website and ask friends to donate $25 toward making a difference for the future!

Wednesday

Share a day in the life--what does life with GSD look like in your family? How are you a part of the GSD world? Are you a patient, family member, researcher, doctor? Tell us about yourself and GSD.

Thursday

· Post a photo in your best AGSD Gear or using GSD equipment! What is your favorite container/bag/useful item and why? Help other families learn how to streamline their lives Tag your photos #AGSD #GSDAwarenessWeek. Get your shirts, new (look on www.agsdus.org for the official link) or use previous t-shirts from other conferences!

Friday

· Head on over to the AGSD Youtube page and check out a few new lectures—or some old ones. Share what you have learned.

Saturday

· Family DAY! Catch up on anything you have missed over the week! What did you learn new? Who did you connect with on social media?

About the Association

The Association for Glycogen Storage Disease - AGSD - was established in 1979 in order to create an organization which would be a focus for parents of and individuals with glycogen storage disease (GSD) to communicate, share their successes and concerns, share useful findings, provide support, create an awareness of this condition for the public, and to stimulate research in the various forms of glycogen storage diseases.

This website provides basic information about the glycogen storage diseases. The information is intended to be of use to people affected by one of the glycogen storage diseases, their families, and other interested parties.

Some forms of GSD cause little in the way of illness, while others are life threatening. Included in this site is a description of the general symptoms, associated problems, current treatment, and long-term outcome for the most commonly diagnosed glycogen storage diseases. It does not do justice to the difficulty patients and their families' experience, and their deep desire for improved forms of treatment or ultimately total correction.

Diagnosis of a rare genetic disease can be a very lonely experience for the patients and their families, and in some cases, for their doctors also. These pages are intended to help reduce that sense of isolation by providing not just information, but also a point of contact.

Contact

info@agsdus.org
1542 Flammang Dr. PMB 1004
Waterloo Iowa 50702

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