PLEASE SUPPORT BARBARA LEE’S - BILL H​.​R. 254 THE NEUROMYELITIS OPTICA CONSORTIUM ACT

PLEASE SUPPORT BARBARA LEE’S - BILL H​.​R. 254 THE NEUROMYELITIS OPTICA CONSORTIUM ACT

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Cindy Fincham started this petition to Representative Peter Welch and

UPDATE:  JAN 11, 2021, Senator Lee has re-introduced this bill to congress and it has been renamed from HR. 321 to HR 254. The title remains the same as well as it's contents.  She continues to champion onward for medical research needed for NMO Patients and their families!

**As Of Jan 2021, we are and will continue to collect signatures on this petition. This Bill is still viable for passage!  PLEASE CONTINUE TO SIGN, DONATE TO CHANGE.ORG TO PROMOTE THIS PETITION SO IT CAN RECEIVE INCREASED CIRCULATION AND SHARE WITH YOUR SOCIAL MEDIA PAGES. Thank you**

On Jan 2013, 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)

Again in 2015, in 2017. and on Jan 8th 2019 and Jan 2020,  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, 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 HOPEFULLY THIS WILL BE THE YEAR IT IS PASSED. SHE HAS RE-INTRODUCED IT AS HR 254. (we are awaiting a summary of the current bill)

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 neuroimmune 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.  Men can also be afflicted. Toddlers up to nonagenarians are not immune from this disease.  NMO affects all races and socio economic populations.  

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. 254 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 bullet points from congress.gov – summary tab)

To view H.R. 254: https://www.congress.gov/bill/117th-congress/house-bill/254 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

 

Please Sign and Share!!!

(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.

0 have signed. Let’s get to 15,000!
At 15,000 signatures, this petition becomes one of the top signed on Change.org!