A comment under another post questioned where we spend our money. G-PACT is staffed completely by volunteers; no one has ever received a salary. But our programs, activities and materials to have costs associated with them. Below are some of the things we do: PFDD G-PACT was chosen as the only advocacy organization to work with the FDA on their Patient Focused Drug Development program. We will be conducting a survey later this year to gather data from patients to be shared with the FDA and other researchers. Gastroparesis was chosen as one of only 20 disease areas to be studied because of the testimony of one our volunteers. PAL Program The Patient Awareness Liaison Program (PAL) is a referral program run through G-PACT that pairs volunteers with GP/CIP sufferers who have questions about these illnesses. The PAL program offers support and answers questions for patients and family and offers a personalized and precise support for those who use the service. We offer a toll-free number for callers. Webinars On a regular basis, G-PACT provides webinars free of charge on various topics related to DTP. Some may be open discussion groups among those this dealing with DTP, and others may be led by a professional in the field or someone who addresses an issue of interest to our patients. Send A Smile G-PACT has created a secure program which allows other patients to provide support to members in need. Using a mail drop, a G-PACT volunteer will collect cards and letters to forward to those individuals. The address for the program is G-PACT Send A Smile, c/o Jen Germain, PO Box 890, Stockbridge, MA 01262. Awareness Month The month of August has been designated as Digestive Tract Paralysis Awareness Month, with a number of activities planned for G-PACT’s support group communities. The largest and most significant events are held during Awareness Week, which encompasses the date of G-PACT’s founding, August 23rd. In addition, G-PACT is working to have all 50 states designate August as Digestive Tract Paralysis Month. YouTube G-PACT is leading in increasing awareness of GP, CI, and CIP through many resources. One is our YouTube Page, which includes a number of videos from various sources. youtube/user/GPACT. Newsletter G-PACT provides a free newsletter through online sources such as our fan page, in our support groups, and on our website to provide you with the latest info about G-PACT and news about what is going on in the DTP world. Newsletters are published in March, June, September and December. Polls At times, unscientific polls will be developed by the Research Department. Polls will be posted on G-PACT social media sites. Once data is tabulated, results will be shared with group members. When warranted, G-PACT will also provide information to members about research studies being conducted by physicians, researchers, pharmaceutical companies, and medical device manufacturers. Clinical Trials The G-PACT Research Department will identify and monitor clinical trials related to digestive tract research and post contact information for participation. Dissemination of Research Data G-PACT works with physicians, medical companies, and researchers to stay current on research studies and describe the needs that patients have in order to direct studies in the appropriate way. As research results are available, they will be disseminated to members of the social media groups. Website The purpose of the G-PACT’s website is to provide information about Digestive Tract Paralysis and the services offered by G-PACT. The G-PACT website is not intended to be a forum for expressive activity by members of the public. Social media groups on Yahoo, Facebook, Twitter and Inspire are available for those activities. Restaurant Cards Restaurant cards are business-sized cards offered free of charge to patients to use when they go out to eat. These cards state that this patient has GP or CIP, a digestive disorder, and may have a feeding tube for nutrition. It makes the request that the patient be allowed to order off the children¹s menu, senior menu (smaller portions, less expensive), or be allowed to share a plate with another customer. There is no legal requirement for a restaurant to accept this card but many will. Restaurant cards can be requested by sending a self-addressed stamped envelope to: G-PACT Cards, 39-31 A 201 Street, Bayside, NY 11361 Venue Cards Venue cards are offered free of charge to patients to assist them in requesting permission to carry their own food and/or drink into certain venues where that is not typically allowed. The card states that the patient has a GI disorder requiring special food and the need to eat small portions throughout the day. In addition, many venues do not offer the types of food well tolerated by DTP patients. There is no legal requirement for a venue to accept this card but many will. Venue cards can be requested by sending a self-addressed stamped envelope to: G-PACT Cards, 39-31 A 201 Street, Bayside, NY 11361. Restroom Access Cards: Restroom Access Cards are offered free of charge to patients to assist them in finding restrooms where no public restroom is available. There are laws in some states that require business owners to allow access to employee-only restrooms. In other states, there is no legal requirement to honor this request but many will. Restroom Access cards can be requested by sending a self-addressed stamped envelope to: G-PACT Cards, 39-31 A 201 Street, Bayside, NY 11361. Grief Program G-PACT has created a secure program which allows other patients to express sympathy to the family of individuals who have died from complications of DTP. Using a mail drop, a G-PACT volunteer will collect cards and letters of sympathy to forward in a packet to the family. This allows individuals to share in the grieving process without G-PACT publicizing personal addresses. The address for the Grief Program is G-PACT Grief Program, PO Box 538, Pine Island, NY 10969. Educational Materials G-PACT provides high quality educational materials such as pamphlets and a booklet on GP and CIP. These are free of charge. To request this information, please e-mail Carol at [email protected]. Motility Doctor Network G-PACT maintains a network of doctors who have agreed to be a part of our network for patient referral services and as contacts if we need assistance with certain issues. Dietitian Network G-PACT maintains a list of dietitians by state who have been determined to have experience in dealing with digestive tract paralysis issues. DDNC (Digestive Disease National Coalition) G-PACT is a constituent member of the DDNC. The Digestive Disease National Coalition (DDNC) is an advocacy organization comprised of the major national voluntary and professional societies concerned with digestive diseases. The DDNC focuses on improving public policy related to digestive diseases and increasing public awareness with respect to the many diseases of the digestive system. The DDNC sponsors an annual lobbying effort each March in Washington, DC. G-PACT has participated with this effort each year and usually has the largest contingent of participants. ANMS (American Neurogastroenterology Motility Society) G-PACT is a member of the ANMS. The mission of the American Neurogastroenterology and Motility Society is to advance the study of neurogastroenterology and GI motility, to translate the scientific advances to patient care, and to disseminate the knowledge to patients and care-givers in order to improve the diagnosis and treatment of patients with neurogastroenterology and GI motility disorders. In July 2012, G-PACT presented at their annual patient/physician symposium in Chicago. We also exhibited to help increase awareness of our work with patients and to advocate for the needs of our patients with leading medical professionals. Oley Foundation The Oley Foundation enriches the lives of those requiring home intravenous and tube feeding through education, outreach and networking. The Oley Foundation holds an annual conference where G-PACT exhibits, as funds permit. Digestive Disease Week Digestive Disease Week is a conference held each year that attracts approximately 15,000 health care practitioners and 2,000-3,000 exhibitors. G-PACT has exhibits at DDW as funds permit.
Posted on: Wed, 03 Sep 2014 17:48:58 +0000
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