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  • Debbie 

The United Mitochondrial Disease Foundation/IFFGD/Advocacy

The United Mitochondrial Disease Foundation

Does a great job of educating, empowering, and advocating for people about mitochondrial diseases. They also do a lot work, among others, in trying to help change the mitochondrial atmosphere for patients, supporters, and physicians. Many patients are in the midst of mitochondrial diseases/malabsorption and layers of other chronic illnesses creating a huge mental fog. They become frustrated. So, when UMDF puts a list together of actions for advocacy.. it is greatly appreciated! I am placing the links here along with the links to the bill/text. I hope I have matched these up correctly because I really like to read the text of a bill when I am signing it. I thought you might like to as well!


S.2212 Biomedical Research Act HR1223 Open Act (in the House)

This Act may be cited as the “Orphan Products Extension Now Accelerating Cures and Treatments Act of 2017” or the “OPEN Act”. Open Act (in the Senate)

Medical Nutrition Equity Act (Senate)

Medical Nutrition Equity Act (House)

New York residents S1316 New York residents A2850

A personal note, I had the diagnosis of idiopathic gastroparesis, colonic inertia, chronic intestinal pseudo-obstruction syndrome, chronic migraines (1999) for many many years.. until research & time gave me more answers then POTS & mitochondrial malabsorption were both added 2011, 2012 I, at this point, was no longer considered “idiopathic.” I, like many others, know our digestive diseases are not “in our heads,” but in our in “broken guts.” We have a longing to “know!” I understand how blessed I am to have been given an answer. It is human to want answers to the unanswered questions. I will never forget nor stop remembering the timing of my answers came when I let go of this burden completely. I was completely at peace with the unknown. My body had created more symptoms which prompted a few more tests in a new time. This led to my eventual blood tests, muscle tests, muscle biopsy.

H.R. 1187 the text of our #MotilityBill

IFFGD Link to its advocacy page with a sample letter to request your representative to cosponsor your Motility Bill.

There you will find all of your additional information about advocacy as well as the resources to track the bill’s progress.

There is additional resource through Capitol Call set-up to use as a resource for requesting representatives to cosponsor

As well as your Facebook townhall

Every resource is a tool to help you advocate towards the goal of passing #HR1187 our #MotilityBill #FGIMD #IBS #CureGP #Gastroparesis

Please, use these links to request your Representatives as cosponsors on our #MotilityBill. We would greatly appreciate your help in the #USA You may too! We pray not! #ThereButForTheGraceOfGodGoI #TakeABite4GP our #WorldWide #Empathetic Campaign. If you can take bites, please do so, with a-post/ picture & #TakeABite4GP. If on the other hand you cannot, please post a picture of the bite you would like to take/eat with #TakeABite4GP & your survival tactics for #Surviving your #Chronic with #BrokenGuts