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2022 NMOSD Awareness Month

Hi! My name is Heather, and I am an NMO advocate and patient. Each year I help 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 sowallanmo@gmail.com

Two 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 for NMO 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 2022 as Neuromyelitis Optica Spectrum Disorder Awareness Month in (state).

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

GJCF Edition Rare Disease Day Shirt.

TSF Edition Rare Disease Day Shirt

2022 NMOSD Awareness Month Gear 2022
Created By
Heather Sowalla
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