“Standing Up” for Dysautonomia Patients!


What it is 

It involves STANDING UP

This is an ongoing awareness campaign run by DYNA Youth Ambassadors. friends or family. The purpose of such a campaign is to:

1) Promote accurate, reliable, balanced and medically endorsed information on dysautonomia conditions. 

2) To promote education of dysautonomia conditions within the general public and extended medical community.  

3) To encourage awareness and support for all individuals afflicted with dysautonomia conditions (not to be self-serving).

4) To raise much needed funds for the DYNA organization and its programs.


How can I participate?

Be creative! Use your imagination! Involve your body, mind and spirit! Just be sure to promote trustworthy, accurate and reliable information on dysautonomia conditions.  Please rememember the DYNA organization is in great need of funds  - a campaign is a great way to promote awareness and fundraising at the same time.  Take action! Together we can all accomplish great things!


Media information

The media can call 301-705-6995 or email us at [email protected] for information. Remember, due to inaccuracies and misconceptions, it is absolutely essential that only accurate and reliable information about dysautonomia conditions is released to the media and general public.


Fundraising information

Awareness Campaigns can operate along with fundraising for the organization (not fundraising for an individual) or can operate independently. If you wish to promote funds for the organization during your campaign we have the following suggestions:

The public is most willing to donate funds when they know the funds go directly to the non-profit organization (and has no chance of being pocketed by someone who has access to it beforehand). We suggest that you have envelopes that are pre-addressed to DYNA, and allow individuals in attendance to place their check or money directly into the envelope. Be sure to seal the envelope in front of them and provide a receipt. You can obtain special donation envelopes from the DYNA office and have people fill them out during your event, or you can save DYNA the expense and create your own on your home computer. Receipt books can be purchased at office supply stores, and you will want to provide a receipt for donations that you accept (utilize the carbon copy variety, give the original to your contributor and send the carbon section in to DYNA with the envelopes).

www.Justgive.org is a secure and direct way to have people make donations to DYNA if you can have your computer available with Internet access during your event! Receipts will automatically be provided by Justgive.org. They accept credit cards and it is a very easy process. We highly recommend this avenue if you can have Internet access available during your event.  Be sure to use a secure Internet access!

For fomal events please complete Fundraising Guidelines or Special Event Application


Suggestions for awareness events/fundraising


Stand A Thon

Adapt this idea to your own capabilities. Talk to your gym teacher and ask about doing an activity for the entire school during gym class one day. Maybe your science or health teacher is interested in getting involved in teaching students about the autonomic nervous system, brain, heart rate and blood pressure. Involve your school nurse. Think outside the box! See how long your teachers and classmates can remain standing. Tell them about your condition, and describe what your own heart rate and blood pressure do when you stand. For a large scale event: find a community center, large field, church hall, school gym or facility willing to work with you. Sign up participants and see who can stand the longest. You can probably get free entertainment, door prizes etc. if you ask around. Be sure to have water on hand, and it is recommended that you have some qualified medical personnel (school nurse, volunteer nurse, paramedic etc.). Your local rescue squad may even pitch in and take blood pressure and heart rates of your participants (they are usually very willing). Educate people about the conditions during the event, give a speech about your own situation (or have someone else do it for you), hand out DYNA literature, show the DYNA video etc. Small scale event: If you just have a few people - stand outside a local grocery store or mall (ask for permission first). Display and hand out information about the conditions, promote awareness.  


Car Wash

This is an easy when the weather is good. Set up a hose, sponges, and a bucket of soap and have some fun playing in the water. There are a few different variations on this fundraiser - you have many options. Hold the car wash at a church or school function. Talk to local businesses (hair studio, car dealers, bagel shops, gas stations etc.) near a major intersection or in a high traffic area. Think about community car washes that you have seen in the past - they are probably good locations that would be willing to work with you. Create big and colorful signs that people can read from a distance, display signs in good locations, announce the date at school, church, etc. via flyers.  


Service Auction

Round up friends and family. Sit them down as a group and tell them about dysautonomia and about your unique circumstance. Show them the DYNA video so they better understand what you are going through. Provide information that they can take with them and pass on to their doctors, friends, etc. Ask them if they are willing to participate in a Service Auction in your honor by providing a service they perform (baby sitting, painting, yard work, house cleaning, a home cooked meal, cookie baking, cakes, etc.) Sign them up and auction off their services in your community (via school newsletters, church bulletins, grocery store bulletin boards, local announcements, mailbox flyers, posters etc.) 


Dog Washes

This activity will separate the animal lovers from the non-animal lovers. It works on the same principle as the car wash, only it is a lot more fun and smells a little bit worse. Since it is logistically more difficult to get dogs to a location than cars, publicize ahead of time in your local newspaper and have people call and sign up for appointments. If the weather is too cold to hold outside, consider checking with local vet offices and see if they will donate the use of their grooming station for certain hours, or ask your favorite Auntie who has a laundry tub in her basement or who lives directly off a main road and is willing to run a hose with hot water outside). You can also offer to wash dogs at their own home premises if Auntie would rather drive you around than deal with the mess (either way…be sure to clean up the mess before you leave). Provide information on dysautonomia conditions to the dog owners and lots of love to the dogs!


Dog Walking Service

Fun with pets and reconditioning for you! If you are not up to dog walking yet, involve a friend to do it in your honor. Place flyers in your neighborhood mailboxes, offer your dog walking services, and include information about dysautonomia (make sure you include the DYNA web site). If neighbors are interested in sponsoring donations in your honor, charge to walk their dog once a week at a set time and provide them with a donation envelope to DYNA (they get a tax deduction and a dog walker!). This activity promotes awareness in your own community, helps your neighbors understand your situation, can be a long-term fundraising activity for DYNA, and is healthy for you at the same time (not to mention good for Fido)! 


Pet Sitting

Well, it is like baby sitting but for pets! Great fun! Put flyers in mailboxes and wait for calls. Be sure to explain your cause as people are more likely to call upon you if they know you are working for a worthy cause. Is there a better activity for someone in the recovery process of an illness? You can keep Fido company while his owner is at work and Fido can keep you company too! Agree on a rate and provide the owner with a donation envelope (once again they receive the tax benefit and Fido receives the friend benefit).


Coffee Hour

Ask your place of worship if you could be responsible for the refreshments that are served during coffee hour. Provide information about dysautonomia and spread awareness through word of mouth. Request donations be sent to DYNA. Consider holding a coffee at your house (or ask your Auntie to hold one). Invite people you know, local physicians, local politicians, school personnel or others that you wish to inform. Get creative. 


Yard Sale

You most likely know how to conduct a yard sale. Just make sure to advertise your event, display literature and spread awareness at the same time. 


Bake Sale

Nothing beats a good old bake sale around the holidays. Be creative. Decorated boxes of candy, individually wrapped cookies, etc. make great presents and sell well. Cookies sell great. You can bake ahead, freeze and hold the event when you are ready.  Another option is to have everyone in your work place, school, or church bake something and hold a bake sale at a local sporting event, school function, office atrium etc. Make sure you obtain permission from all facilities involved. Be sure to take DYNA literature with you (or attach the post cards from our web site to each package) so that people learn about your condition!


Ribbon Car Magnets or Awareness Bracelets

What better way of spreading awareness? You can order these products from DYNA or make your own (just be sure to get approval from DYNA if you are making your own).  Refer to the DYNA Products order form on this web site.


Food Events

Hosting events with food is a sure bet. Food is a product that people just can't live without, so it will draw in customers. Food events are also great ways to bring people together. Use these events to socialize and get people to better understand your medical condition too! Also try and make things interesting. Incorporate a theme in with the meals and dress and decorate appropriately.

Spaghetti Dinner

The spaghetti dinner is a classic event. It takes very little effort to prepare, is fairly inexpensive, and everyone goes home full. Make sure that you make enough food for everyone.


Halloween Party

A Halloween party can be great fun to throw and you can even wear a costume that allows you to sit (be an Egyptian Princess, King or Queen on a throne, Witch sitting on a chair next to a pot of dry ice, etc.). Set up a haunted house or have a contest for the best costume or pumpkin! Spread awareness, get some social interaction and raise some funds for DYNA all at once!


Letter Campaign

Send a letter to your family members, friends and associates. Give them information about dysautonomia, tell them about DYNA, provide the website, and request that they consider making their end of year donations to the organization that you are passionate about supporting. You can do this in your holiday cards or for no reason at all. It is quite simple and often quite productive. They can send donations in via mail or via Justgive.org, and if they list that they are in your name - you will be notified.


Email Campaign

Put information about DYNA and your condition in your email signatures. Consider emailing your friends and family similar to the Letter Campaign above.


Web Campaign

Get word out via the web! Post about DYNA on health sites, forums, etc. and help other youth find us!  Just be sure to only promote accurate, reliable, medically endorsed information!

Contact the DYNA office at 301-705-6995 if you have questions or need assistance.