G-PACT reaches thousands of people daily through our Facebook page and groups. But most people have no idea that what G-PACT does is so much more than supporting patients on social media.
G-PACT is a legal 501(c)(3), founded on August 23, 2001. We are staffed completely by volunteers. Over the past 14 years, we have accomplished the following:
- G-PACT was chosen as one of only 15 organizations nationwide to develop and collect data for a health-related registry. Our Registry will focus on gastroparesis. Data will be shared with researchers and is the only international registry to date. It should be up and running by the end of 2015.
- A G-PACT volunteer testified before the FDA in October 2012, and that testimony led to gastroparesis being chosen as one of only 20 disease areas to be included in the Patient Focused Drug Development program (PFDD). We testified at the FDA meeting in May, 2015 and through a portal on our website, we collected data from patients and caregivers, and presented a report to the FDA in July, 2015.
- Another G-PACT volunteer successfully lobbied in 2013 to get 20 states to designate an Awareness Month for digestive tract paralysis (DTP).
- In 2010, our efforts helped to change a Medicare decision that would have stopped covering idiopathic gastroparesis as a primary diagnosis.
- G-PACT has sponsored legislative campaigns that helped to obtain sponsors for HR2239, HR 842 and we are currently working on obtaining sponsors for HR 2311.
- We’ve worked with the TSA to help them better understand the needs of patients who need to travel with medical supplies, tube feedings, or TPN.
- We are members of the DDNC (Digestive Disease National Coalition) and sit on their Board. We lobby in Washington, DC every March.
- Through a grant awarded by Medtronic, G-PACT established and maintains a toll-free number where patients can call and speak with someone about their disease (1-888-874-7228). That grant also covered the cost of our original educational materials.
- We are members of ANMS (American Neurogastroenterology and Motility Society) and we presented at their patient/physician symposium in 2012.
- G-PACT Board members collaborate with a variety of different non-profits that support patients. We also collaborate with non-profits for other diseases that may have gastroparesis as a complication.
- In 2010, patients on Facebook voted G-PACT as one of only 200 non-profits to receive a grant to help us continue our work.
- Leading motility doctors and pharmaceutical companies often come to us when they need information from patients for a study and survey. Many doctors recommend us to their patients as a trusted resource for information and patient support.
- We created the first ever Public Service Announcement for gastroparesis https://www.g-pact.org/gpact-in-action/public-relations/psa
- In 2004, we were invited to speak and display at a conference in Baltimore sponsored by ANMS and the now defunct GPDA.
- In 2003, Medtronic invited us to speak about gastroparesis to a group of physicians at Digestive Disease Week (DDW).
- We have been rated by Great Nonprofits as one of the Top-Rated Nonprofits 5 years in a row.
- We exhibit and present at Digestive Disease Week (DDW) and the Oley conference as funds and health permit.
- G-PACT established the colors for DTP (lime green and yellow), made the acronym DTP (digestive tract paralysis) a common term and established August as Awareness Month for digestive diseases.
- We provide free patient resources through our website (www.g-pact.org); pamphlets for gastroparesis and CIPO ; restaurant, venue and restroom access cards https://www.g-pact.org/patient-resources
- Our G-PACT Youtube channel has patient videos and free webinars https://www.youtube.com/user/GPACT
- Two cookbooks are available for purchase with recipes that are GP friendly. Each recipe has been reviewed by a dietitian and nutritional information is included https://www.g-pact.org/gpact-products
- We maintain a listing of physicians and dietitians who have an interest in motility disorders https://www.g-pact.org/doctors-for-gpact, https://www.g-pact.org/dietitians-for-gpact.
Given that we are all volunteers, and we are all patients with DTP, we have made huge strides in increasing awareness and advocating for more research to be done. We will continue to fight until there are better treatments options and, ultimately, a cure.