DDNC 2019

Each year, the digestive disease national coalition puts on an event in Washington, D.C. In March. It’s a two day event where patients, doctors, and other representatives get together and speak at the house and senate. Together, we all advocate for better healthcare. Click here to read a recap of our PR director Samantha’s first experienceContinue reading “DDNC 2019”

PRESS RELEASE: #SubHealth to Review Patient Access to Investigational Drugs NEXT WEEK

9/29/17 PRESS RELEASE HEARING: #SubHealth to Review Patient Access to Investigational Drugs NEXT WEEK https://energycommerce.house.gov/news/press-release/hearing-subhealth-review-patient-access-investigational-drugs-next-week/ WASHINGTON, DC – The Subcommittee on Health, chaired by Rep. Michael C. Burgess, M.D. (R-TX), announced a hearing for Tuesday, October 3, 2017, at 10:15 a.m. in room 2322 of the Rayburn House Office Building. The hearing is entitled, “Examining Patient Access toContinue reading “PRESS RELEASE: #SubHealth to Review Patient Access to Investigational Drugs NEXT WEEK”

TPN Awareness Week!!!

Originally posted on Hustle & Heart:
Happy TPN/HPN awareness week! This week, the OLEY foundation recognizes August 7-11 to help spread information and awareness of TPN/HPN. (TPN is sometimes called HPN, which stands for HOME Parenteral Nutrition. They’re considered the same thing). This week, I hope to share as much as I can about TPN, and…

ACTION ALERT!

This message comes from OLEY.org – enriching the lives of those living with home intravenous nutrition. This is an extremely important time to be engaged! We will be sending alerts periodically, but posting updates to oley.org/Legislation frequently. Stay tuned for updates on this and other important legislative issues. ACTION ALERT Ask Senators to vote NOContinue reading “ACTION ALERT!”

5 Important things to know if you are Newly Diagnosed with Gastroparesis

by Nancy Brown for G-PACT.org YOU ARE NOT ALONE Gastroparesis (GP) is one of several digestive motility disorders that impact the body’s ability to digest food.  Severity ranges from mild GP, where the disease can be managed by diet, to severe, requiring a feeding tube in order for the body to process nutrition.   There isContinue reading “5 Important things to know if you are Newly Diagnosed with Gastroparesis”

The PIE FACE CHALLENGE

This article from David Wilson of Itemlive.com introduces a young man named Andrew Billeveau. See the article where Andrew talks about his gastroparesis and how to raise money and awareness he took part in The Pie Face Challenge article. ! The article mentions G-PACT and our own Operations Director Colleen Beener. Visit G-PACT’s own Pie Face Challenge onContinue reading “The PIE FACE CHALLENGE”

URGENT: 21st Century Cures Act needs your support RIGHT NOW

Patient Alert: In a much more rapid fashion than expected, the House of Representatives is currently voting on a final version of the 21st Century Cures Act. Though certainly only representing an initial foundation, the Act is the broadest effort in the fight for FDA reform that I have seen in nearly 25 years.  Continue reading “URGENT: 21st Century Cures Act needs your support RIGHT NOW”

Amitriptyline: A Sound Release

At first I was unaware that amitriptyline was used to treat depression. I could not understand how this could help with gastroparesis. After careful study, I learned that the drug works on the central nervous system to increase levels of certain chemicals in the brain.

The Domperidone Problem – The Goldwater Institute tells the story

Domperidone is a drug that has been used to treat patients with gastroparesis. It is not available by prescription in the United States, and while it was once able to be formulated in compounding pharmacies, that practice has been banned by the FDA. Domperidone is also available in many other countries, including Canada, but the FDAContinue reading “The Domperidone Problem – The Goldwater Institute tells the story”

The Right-To-Try legislation

Right To Try is a legislative effort to expand the ability of terminally ill patients to gain access to experimental medicines. It would prohibit the federal government, including the US Food and Drug Administration, from taking any action to prevent patient access to life saving treatments. “The FDA does have its own Compassionate Use program aimedContinue reading “The Right-To-Try legislation”