October is Dysautonomia Awareness Month!
Before we get into advocacy, let’s touch on basic awareness…
What is dysautonomia?
Dysautonomia is the umbrella term that encompasses several different conditions that cause a malfunction of the autonomic nervous system (ANS).
The ANS – part of the peripheral nervous system – innervates smooth and cardiac muscle and glandular tissues and governs involuntary actions, such as heart rate, blood pressure, digestion, dilation of the pupils, kidney function, sexual arousal, temperature control, etc.
People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, and malnutrition.
What can you do during the awareness month?
With the help of Dysautonomia International – an organization whose mission is to “identify the causes and cures for all forms of dysautonomia and to enhance the quality-of-life of people currently living with these illnesses – here are some things we can do during October!
Cupcake for a cure
Just because you’re working towards advocating for a rare disease community doesn’t mean you can’t have fun with baking!
Dysautonomia International suggests a bake sell that not only raises funds – but awareness!
Here are a few easy steps!
1. Identify a busy location where you can set up a table and a few chairs for a bake sale. Make sure to ask permission to hold the bake sale there and let the property owner knows the money you raise is going to a 501(c)(3) charitable organization.
2. Decorate your table area with turquoise balloons or other on-theme dysautonomia awareness signage! Anything to help your area pop a little more with detail and awareness materials.
3. You can find educational handouts on Dysautonomia International’s website to give out to those interested in learning more about Dysautonomia. Having these on the table can provide brain food to go along with real food!
4. Have fun at your bake sale! Take photos and send them to Dysautonomia International so they can post it on their social media sites.
Send to firstname.lastname@example.org.
5. After the event, mail the money you raised to Dysautonomia International. Please don’t send cash through the mail though, a check payable to Dysautonomia International is safer. Be sure to include a note to let them know who hosted the bake sale and an address so they can send a thank you note and receipt back to you.
Checks can be mailed to:
PO Box 596
East Moriches, NY 11940
Dress down for dysautonomia awareness
Hosting a “Dress Down Day for Dysautonomia Awareness” at your office or school is a great way to raise awareness about dysautonomia and help raise funds for research!
And let’s be real – who doesn’t like a casual dress day?
All you have to do is get permission from the person in charge, pick a date (casual Fridays anyone?), announce your Dress Down Day, collect the funds, and when the event is over, send your donation to Dysautonomia International. They will provide a thank you letter so your school or office knows we appreciate their contribution.
You’ll want to hang up flyers at the office or school:
“Dress Down Day for Dysautonomia Research” office flyer
“Dress Down Day for Dysautonomia Research” school flyer
If you want to hand out some written materials related to dysautonomia, check out the Printed Materials page.
Please complete this Donation Form and mail it in with your donation. Checks can be made payable to “Dysautonomia International” and mailed with a copy of the Donation Form to:
c/o Ellen Kessler, CPA
6151 Executive Blvd.
Rockville, MD 20852
So whatever you can do, please consider doing, to help the dysautonomia patient community!