Friday, February 24, 2017

Getting a day Proclaimed in your State for Blount's Disease

Recently the Governor of Kansas, Sam Brownback, approved a Proclamation for Blount's Disease Awareness Day. It is an honor for this day to be recognized throughout the state and  awareness can be made for this condition. Some have recently asked me what I did so they can get an awareness day for Blount's within their state. After writing letters, submitting petition signatures, emails and hearing no answers back, I reached out to our State Ambassador from the National Organization for Rare Disorders, Eden, and she led me in the right direction on how to apply and submit my application.

A proclamation commends individuals or announces upcoming events or celebrations through a formal public announcement or declaration made by government officials. Blount's disease is the perfect opportunity to ask for a proclamation to honor and recognize those who had or have Blount's Disease.

Depending on which state you reside in some will let you apply online and some will have you mail or fax your request.  Your first step would be to contact the government official’s office of your state to request the proclamation. Keep in mind some states want you to submit your request up to 4 weeks in advance of the date you are requesting.
Governor Sam Brownback, Kansas

Be sure to check the official’s website for instructions on how to submit a formal request. There may be an online form or instructions on what information must be included in a letter. And plan in advance to allow enough time for them to process it. You have to option to have your proclamation mailed to you once approved or you can  meet with the official for the proclamation signing.
You can likely be in the room when the proclamation is signed, and the official may let you take a photograph or group photo of the signing.

Here is a sample of what I requested on my application:

WHEREAS, there are nearly 7,000 diseases and conditions considered rare(each affecting fewer than 200, 000 Americans) in the United States, according to the National Institutes of Health (NIH); and

 WHEREAS, Blount's Disease is considered a rare disease affecting less than 1% of the population in the U.S. with no supporting organization and not enough research; and

 WHEREAS, Blount's Disease is a developmental disorder characterized by abnormality in the growth plate in the upper part of the tibia that causes pain and can lead to deformity and arthritis issues in the future; and

  WHEREAS, Individuals affected by Blount's Disease often experience problems such as difficulty finding a medical expert, and lack of access to research and treatment; and

 WHEREAS, the cause of Blount's Disease is unknown and patients and caregivers who have this rare disease will now participated in that observance.
Build a relationship and promote your Proclamation:
Once your request has been approved and you have received your award, remember to always acknowledge the officials contribution. This can be done for example by sending a thank you note with a picture of you and the proclamation, or a t-shirt representing the condition. Reach out and contact local newspapers throughout your state about the proclamation along with a photo. If your article happens to be published, you can send a copy to the official who approved your request as a thank you.
If you have any further questions on this process feel free to email me at blountsdiseasestrong@gmail.com or contact me on fb @blountsdiseasestrong




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