Jul. 13, 2015
Posted by Lisa Sencen
The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) is an international, non-profit organization that functions as an information resource center for people affected by digestive motility disorders. The organization also serves as an integral resource for members of the medical community. To learn more about AGMD and digestive motility disorders, please visit agmd-gimotility.org
NORD was delighted to learn more about AGMD during this Q&A with President, Patient, and Founder of AGMD, Maryangela DeGrazia-DiTucci.
1.What does it mean to you personally to be a patient organization serving the rare community?
It is a humble privilege to be able to serve our rare community. I have observed the painful weariness, the constant anxiety, the loss of hope and the anguish and fear on the faces of patients. And I have seen the troubled look, search for answers and the helplessness in the eyes of parents who have a child who is suffering. I have consoled their tears, listened to their stories, shared in their successes, mourned their losses and walked with them through their challenges. They are the passion, drive and inspiration that propel our organization to continue its important mission and serve as a “Beacon of Hope.” I am truly blessed and extremely honored to serve … an honor that I have dedicated my life to since 1991.
2.What do you find your patient community values most from your organization?
Connecting with others who share similar medical journeys is extremely valuable to our community members. Knowing that others truly do understand and are here to help each other can be life changing. We offer many programs in order to facilitate this bridge of hope. Where there is a need, we strive to meet that need. Our organization also provides advocacy, education, resources, physician and referrals, and accurate up-to-date information regarding digestive motility disorders, which is also extremely beneficial. In addition, we play an integral part by providing a forum for patients and families in order to discuss various issues related to living with their illness. Giving voice to their experiences not only makes a difference in their own lives, but the lives of others.
3.What are some of the challenges your organization has faced?
Some of the major challenges AGMD has faced include:
- Dispelling many of the misconceptions that surround digestive motility disorders. There are patients with gastroparesis and pseudo-obstruction for example, who do not look ill even though they are suffering greatly.
- Trying to help others understand both in the general public as well as in the medical and related communities. With a rare disease such as chronic intestinal pseudo-obstruction, it is not only difficult for others to comprehend, but for patients to get the help that they need. This is one of the reasons why education is a huge focus of our organization.
- Gaining financial support in order to educate, promote awareness and further research has also been extremely challenging.
4.What’s been your most successful awareness campaign and/or fundraising event?
One of our most successful campaigns came many years ago, when we held our very first AGMD Digestive Motility Symposium. It was a milestone event that it was the very first time patients and their families gathered together in the same setting as physicians, scientists, dietitians and those in other related professions. For three days, there was an exchange of knowledge and experiences shared between the medical professional attendees and patients as well as their families. The awareness heightened and there grew a deeper understanding of many of these rare digestive motility disorders. The event was such a huge success that AGMD has continued to provide these types of educational programs throughout the years and will be implementing new and innovative programs as well in the coming months. Next year, AGMD will be commemorating its 25th Anniversary. For twenty-five years we have had the honor of serving our community and as we look towards the future, it is our prayer that through our efforts and the efforts of others, those impacted with rare digestive motility disorders will obtain better diagnosis, treatments and eventually cures so that they no longer have to live in the shadows of an unknown world of perpetually suffering.
12 Roberts Drive
Bedford, MA 1730