Thirty-One Days Hath October, and Thirty-one Unique Events Happening for Dysautonomia


Are you ready for the October 2022 Dysautonomia Challenge? You can make this October stand out on your calendar by making each day meaningful, event ladened, exciting, and dedicated to patients and families whose lives have been affected by dysautonomia.

It is hard to believe that this month marks the eleventh annual Dysautonomia Awareness Month looking back at the first campaign in October 2012. There has been progress, but we must continue to look to the future and the rewards that come with dedication and hard work.

Volunteers have been responsible for organizing thousands of activities to bring awareness to dysautonomia throughout the world. The number of diagnostic delays has fallen, resources have been improved, and compassion is more and more evident. It occurs in tandem with volunteer awareness events. Funding for research has also increased.

Even if your family has not been touched by dysautonomia, you will feel rewarded when you create a new event and see how grateful the patients and families are for your generosity. If this is your first event, the organization has a wealth of suggestions. Hopefully, you will be able to experience conducting a challenge and learning about event participation that you can use in the future.

What is Dysautonomia?  ( (dis’aw-tō-nō’mē-ă)

The disease is defined as abnormal functioning of the autonomic nervous system. That is the part of the nervous system that is responsible for controlling bodily functions such as heartbeat, breathing, and the digestive process. The nervous system regulates bodily functions that are not directly controlled.

Some Ideas for You as a volunteer; Are You Ready?

Do you enjoy social media? Do you have a following? Post any and all information about dysautonomia awareness and you will have created a social media campaign. Invite your friends and their friends to join and let your campaign grow exponentially. Be the first to start a dysautonomia campaign on Facebook, Instagram, or Twitter, and feel free to use some of the educational graphics that appear each day.

Turquoise is Attention Grabbing

This event is unique. But do not let that stop you.

Letters of request for this event and others are available here:

Dysautonomia International suggests that international volunteers shine a turquoise light on a monument or building in their community as an outstanding symbol of hope.

Government Recognition

Check with your regional or local government to set out a proclamation that recognizes October as Dysautonomia Awareness Month. A proclamation request letter is available along with the other request letters. The proclamation is issued on behalf of Dysautonomia International.

You may send the Dysautonomia International photos of your family or yourself, and if you wish you may include the proclamation. The photos will be shared with other photos on their social media during the month of October. Photos should be emailed to [email protected]. Suggest that your local officials tweet the proclamation as well.

Billboards: Anything to Help the Cause

Billboards are subliminal. They are there for the community to see and enjoy. There are several billboard layouts that were professionally designed and are available to volunteers. If you take a photo of the completed billboard, please send it to [email protected]. The photo will be shared on the organization’s media channels during the month of October.

The press is undeniably an effective media to spread awareness. Contact various media outlets to find out if they would meet with you for an interview about dysautonomia. You could also ask about writing an article that would bring awareness to others.

A Note of Caution

When writing about a disease it is critical to be medically accurate, especially when the media is involved. If you are unsure about certain facts, you may obtain information about dysautonomia or a press release sample by emailing [email protected].

Be Proactive by Hosting a Fundraiser Online

Your fundraiser can be personal yet effective. One of two distinct methods of raising funds and awareness for patients and their families is a Facebook fundraiser.

Or ask your family and friends to donate through the Dysautonomia International website:

Look for the “in honor” field shown on the donation form. The organization will inform the patient of the amount that was donated in honor of.

An in-person fundraiser is a direct and convenient way to raise awareness and funds for physician education, dysautonomia research, or provide programs for patient empowerment. If that approach appeals to you, then you can email [email protected] for assistance.

There are many more volunteer opportunities and creative ideas are always welcome. A volunteer may also participate by attending a Dysautonomia International event either in person or virtually.

Awareness events are already online and may be found on the organization’s Facebook page. Check the events listed on the Facebook page to locate an event online or in your area.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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