Hi! My name is Heather, and I am an NMO advocate and patient. This year I’m also so proud to be a member of the PAC! . The last few years I’ve helped spearhead a campaign to get as many states as we can to approve NMO awareness month in March. This year is no different! I have put together this page to help you navigate how to make this happen. If you have any questions please email me at : hsowalla@advocateforNMO
Let us all prepare for this challenge and take it head on!!!
A few years ago, my niece and I painted our faces green for NMO Awareness Month and Rare Disease Day and last year my nephew and I did the same. We want to see your green! It doesn’t have to be on your face! It can be a shirt, your nails, even your shoelaces! Help us color the world green!
How do I help?
It’s quite easy. All you have to do is go to your states governors webpage and find the section that says, “Request a Proclamation”
The next step is to submit all information required including the letter below and the proclamation wording. It’s all been provided here for you to use. Also, it helps if you can give some background such as why it’s important to you.
More Ways To Help!!
For many years, patients with NMOSD (Neuromyelitis Optica Spectrum Disorder) and friends have advocated state by state to have March declared as NMOSD Awareness Month. We have to re-apply every year, and we do not get proclamations from every state.
NMOSD is a rare autoimmune disease of the central nervous system that primarily attacks the optic nerve, potentially causing blindness; the spinal cord, sometimes causing paralysis; and the brainstem, causing myriad neurological problems and even death.
By signing this petition it is our hope to get the senators to make our proclamation permanent. Help us in this endeavor!
Letter Template to Govenor
Governor [FULL NAME]
[ADDRESS]
Dear Governor [LAST NAME],
I am writing to ask you to declare March as [STATE’S] awareness month for Neuromyelitis Optica / Spectrum Disorder, more commonly known as NMO. Please join the entire NMO community in observing this special NMO Awareness Month every year in perpetuity.
As residents of [STATE], we understand NMO is underdiagnosed due to the lack of education and awareness in the medical and patient communities.
NMO is an uncommon autoimmune disease syndrome of the central nervous system that affects the optic nerves, spinal cord, and/or brain. 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.
(Insert connection to NMOSD)
Every March, an annual international NMO Roundtable Conference and Patient Day is hosted by The Guthy-Jackson Charitable Foundation, a nonprofit dedicated to curing NMO. These conferences bring together patients, healthcare professionals, scientists, and industry stakeholders to share and learn face-to-face. Since 2008, the foundation has hosted thousands of attendees from countries all over the world, and the conferences continue to grow each year.
The Sumaira Foundation is another 501(c)(3) organization that is dedicated to generating global awareness of neuromyelitis optica spectrum disorder (NMOSD), fundraising to help find a cure, and creating a community of support for patients and their caregivers.
[STATE] has a strong history of support for its citizens’ causes. We respectfully request you designate March as NMO Awareness Month in [STATE] in perpetuity.
With best regards,
[NAME], NMO Advocate
[ADDRESS]
[PHONE]
[EMAIL]
Proclamation Wording
WHEREAS, Neuromyelitis Optica Spectrum Disorder (NMOSD) is a rare and relatively unknown autoimmune disease that currently has no cure; and,
WHEREAS, NMOSD attacks the central nervous system and can cause permanent disability, including blindness and paralysis; and,
WHEREAS, the cause of NMOSD is still a mystery and there is currently only three FDA-approved treatments for the disease; and,
WHEREAS, when mistaken for other diseases, treatments can exacerbate NMO symptoms; and,
WHEREAS, increased awareness of the disease has allowed doctors to become more likely to recognize the varying manifestations of the disease; and,
WHEREAS, the NMOSD community is dedicated to increasing awareness and understanding about this disease in order to promote research, improved patient care and outcomes so that a cure may ultimately be found;
NOW, THEREFORE, I, (Insert Govenor Name) governor of (insert state), do hereby proclaim March 2024 as Neuromyelitis Optica Spectrum Disorder Awareness Month in (state).
EIN
The governor’s office may request the EIN for the Guthy Jackson Charitable Foundation. That number is: 26-6461545
Links to request proclamations!
Alabama
https://contact.governor.alabama.gov/contact_procs.aspx
Alaska
http://aws.state.ak.us/CrmForms/Home/WebRequest
Arizona
https://azgovernor.gov/engage/proclamations
Arkansas
https://governor.arkansas.gov/online-services/proclamation-request/
California
https://govapps.gov.ca.gov/gov39mail/index.php
Colorado
https://www.colorado.gov/governor/request-letter-proclamation-or- flag
Connecticut
https://portal.ct.gov/Office-of-the-Governor/Contact-Governor- Malloy/Request-a-Proclamation
Delaware
Yes
https://governor.delaware.gov/request-proclamation-tribute/
Florida
https://www.flgov.com/proclamations/
Georgia
https://gov.georgia.gov/proclamations
Hawaii
https://governor.hawaii.gov/contact-us/request-a-proclamation/
Idaho
Yes
https://gov.idaho.gov/mediacenter/proc/index.html
Illinois
https://www2.illinois.gov/gov/contactus/Pages/Proclamation.aspx
Indiana
https://www.in.gov/gov/2916.htm
Iowa
https://governor.iowa.gov/constituent-services/proclamation-request
Kansas
https://governor.kansas.gov/serving-kansans/constituent- services/proclamation-guidelines/proclamation-request/
Kentucky
https://secure.kentucky.gov/formservices/Governor/ProclamationRequestForm
Louisiana
http://gov.louisiana.gov/index.cfm/form/home/13
Maine
https://www11.maine.gov/governor/lepage/contact/proclamation- request-form.html
Maryland
https://governor.maryland.gov/proclamation-requests/
Massachusetts
https://www.mass.gov/how-to/request-a-proclamation-from-governor-
Michigan
https://www.michigan.gov/whitmer/0,9309,7-387-90498_90663_90698---,00.html
MINNESOTA https://mn.gov/governor/resources/proclamations/
MISSISSIPPI https://www.governorbryant.ms.gov/Pages/Contact.asp
Missouri
https://governor.mo.gov/contact-us
Montana
http://governor.mt.gov/Contact/Share-Your-Comments-with-Governor-
Nebraska
https://governor.nebraska.gov/proclamation-request
Nevada
http://gov.nv.gov/contact/proclamation/
New Hampshire
https://new-hampshire.secure.force.com/support/GOV_Proclamation
New Jersey
https://nj.gov/governor/contact/proclamations/
New Mexico
New York
https://www.governor.ny.gov/content/governor-contact-form
North Carolina
https://governor.nc.gov/submit-request/request- proclamation/proclamation-request-form
North Dakota
https://www.governor.nd.gov/contact-us
Ohio
https://www.governor.ohio.gov/Contact/Contact-the-Governor
Oklahoma
https://www.ok.gov/triton/modules/formbuilder/form.php?form_id=0 6f2c591e968592fd1c77e83874080933b60eb19edcdc602986eae9c12d8
Oregon
https://www.oregon.gov/gov/Pages/Proclamation-Request- Guidelines.aspx
Pennsylvania'
https://www.governor.pa.gov/contact/#OnlineForm
Rhode Island
http://www.governor.ri.gov/contact/
South Carolina
https://iqconnect.lmhostediq.com/iqextranet/EForm.aspx?__cid=FSL_S C_GOV&__fid=100039
South Dakota
http://sd.gov/governor/contact
https://www.tn.gov/governor/contact-us/proclamation-request.html
Texas
https://gov.texas.gov/apps/contact/assistance.asp
Utah
https://gocentral.utah.gov/Request/Declarations
Vermont
https://governor.vermont.gov/proclamation-request
Virginia
https://www.governor.virginia.gov/constituent-services/request-a- proclamation/proclamation-request/
Washington
https://www.governor.wa.gov/contact/requests-invites/request- ceremonial-proclamation-greeting-or-letter/request-ceremonial
West Virginia
https://governor.wv.gov/Pages/request_proclamation.as
Wisconsin
https://appengine.egov.com/apps/wi/governor/document-request
Wyoming
https://docs.google.com/a/wyo.gov/viewer?a=v&pid=sites&srcid=d3lvL mdvdnxnb3Zlcm5vcnxneDo2YWZjMmUzMDY3ZWJhZjY0