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!
UMDF ACTION CENTER LINKS
http://pi.umdf.org/actioncenter. Bill HR5062
S.2212 Biomedical Research Act https://www.congress.gov/bill/115th-congress/senate-bill/2212/text
https://www.congress.gov/bill/115th-congress/house-bill/1223/text 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”.
https://www.congress.gov/bill/115th-congress/senate-bill/1509/text Open Act (in the Senate)
Medical Nutrition Equity Act (Senate) https://www.congress.gov/bill/115th-congress/senate-bill/1194/text
Medical Nutrition Equity Act (House)https://www.congress.gov/bill/115th-congress/house-bill/2587/text
New York residents S1316 https://www.nysenate.gov/legislation/bills/2017/s1316/amendment/a
https://www.nysenate.gov/legislation/bills/2017/A2850 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. https://www.iffgd.org/advocate-for-digestive-health/taking-action-in-washington/how-to-get-your-voice-heard.html
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 https://goo.gl/goU9Ft
As well as your Facebook townhall https://goo.gl/LFpHPE
Every resource is a tool to help you advocate towards the goal of passing #HR1187 our #MotilityBill #FGIMD #IBS #CureGP #Gastroparesis