PLEASE SUPPORT BARBARA LEE’S - BILL H.R. 321 THE NEUROMYELITIS OPTICA 2019 CONSORTIUM ACT
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UPDATE: JAN 08, 2019, Senator Lee has re-introduced this bill to congress and it has been renamed from HR. 326 to HR 321. The title remains the same as well as it's contents. She is fighting hard for us!
On January 5th 2017, Congresswoman Barbara Lee (D-Calif) introduced to the House of Congress Bill H.R. 326 The Neuromyelitis Consortium Act, on behalf of patients with Neuromyelitis Optica. (also known as Devic's Disease)
Congresswoman Lee has introduced this bill since 2013. Again in 2015 and 2017. And again on Jan 8th 2019, Each time the bill has been introduced to the House Committee of Energy and Commerce, who have then sent it to the Sub Committee on Health. Each of those years including 2017, it has stalled and never advanced from the House to the Senate. We need your support and that of your respective state’s lawmakers to help sponsor this bill. THIS BILL IS VERY MUCH ALIVE AS SHE IS NOT GIVING UP AND LETTING IT FALL ON A PILE OF UNPASSED BILLS. SHE HAS RE-INTRODUCED IT AS HR 321. (see the updated bill submitted)
Please support this Bill and urge your State’s Representatives to do the same. We need 100,000 signatures to be heard by Congress!!!
Currently, there is no known cause for NMO, nor cure. We need to know why and how to cure this rare orphan autoimmune disease of the Central Nervous System, that can blind, paralyze or do both. 9 out of 10 are women with a median age of 40. Toddlers up to nonagenarians are not immune from this disease. NMO affects all races and socio economic classes.
We need improved response and treatment protocols across the U.S. in every state, in every hospital. Only 1% of doctors will have ever treated a diagnosed case of NMO in their lifetime, meaning the other 99% have only text book experience in treating an NMO patient. Those with no diagnosis can sometimes receive the wrong diagnosis of MS, ADEM, Transverse Myelitis, Meningitis, etc. And with a wrong diagnosis comes the wrong treatments that can make you worse!
H.R. 321 would amend the Public Health Service act to create a National Neuromyelitis Optica Consortium . It would provide grants and organize research with reference to the causes of and risk factors for Neuromyelitis Optica.
Part B of title IV of the Public Health Service Act (42 U.S.C. 284 et seq.) would be amended by adding after section 409J the following new section:
409K. NATIONAL NEUROMYELITIS OPTICA CONSORTIUM. It would require the National Institutes of Health (NIH) to establish, administer and oversee this consortium to:
- award grants for research on the causes of, and the risk factors and biomarkers associated with, NMO;
- assemble a panel of experts to provide guidance and recommendations on research design and protocols; and
- designate a central laboratory to collect and analyze data from this research and to make the data and analysis available to researchers.
(excerpt bulletpoints from congress.gov – summary tab)
To view H.R. 321: https://www.govtrack.us/congress/bills/116/hr321/text the pdf for this bill is also attached to this link so you can read it in it's entirety. 7 pages.
Neuromyelitis Optica (NMO) is an uncommon disease syndrome of the central nervous system (CNS) that affects the optic nerves and spinal cord. Individuals with NMO develop optic neuritis, which causes pain in the eye and vision loss, and transverse myelitis, which causes weakness, numbness, and sometimes paralysis of the arms and legs, along with sensory disturbances and loss of bladder and bowel control. NMO leads to loss of myelin, which is a fatty substance that surrounds nerve fibers and helps nerve signals move from cell to cell. The syndrome can also damage nerve fibers and leave areas of broken-down tissue. In the disease process of NMO, for reasons that aren’t yet clear, immune system cells and antibodies attack and destroy myelin cells in the optic nerves and the spinal cord. (Definition courtesy of the Guthy Jackson NMO Foundation)
This petition is dedicated to my daughter Ria Fincham (pictured above) who is one of the 15,000 patients bravely battling this disease since July 1, 2012 and to all the NMO patients and their families who need your help moving forward towards a cure.
This petition is directed to: House Energy and Commerce Subcommittee on Health
Congresswoman Anna Eshoo (chairwoman); Congressman G.K. Butterfield (vice chairman), et al
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(All correspondence regarding this petition can be sent to the sole creator of this petition: Cindy Fincham via email to: YesOnHR326@gmail.com) Thank You.
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