Local events are a great way to raise awareness and raise critical funds for The VEDS Movement. Activities can be done by an individual, a family, or a group of friends. They can include health fairs, bake sales, garage sales, penny drives, and presentations to local medical school students. We’ll share ideas with you and arrange for meetings where team members can share ideas with each other, discuss successes, and help each other plan for the future. We can help you tap into others in the Vascular Ehlers-Danlos syndrome community to get involved. You can also encourage your friends, family members, co-workers, and neighbors to make your event a success. Want to join the Community Action Team to help support The VEDS Movement? Join by emailing volunteer@marfan.org.
Fundraising Projects and Awareness Events
Fundraising and awareness projects can be conducted by individuals, family groups, and companies, and can be held online or in person. We’re here to offer encouragement and help you get started!
The Community Action Team fundraisers not only raise much-needed funds for The VEDS Movement; they also raise awareness about Vascular Ehlers-Danlos sybdrome, or VEDS. Early diagnosis is important to getting quality care at an earlier age, and knowing activities and circumstances to avoid.
Facebook Fundraising
It is easy for you to turn your birthday into a Facebook fundraiser for The VEDS Movement. Here’s how:
1. Start here: https://www.facebook.com/fund/TheMarfanFoundation/
2. Edit the title of your fundraiser to let everyone know you are raising money for The VEDS Movement, a division of The Marfan Foundation. This is critical!
3. There is wording about The Marfan Foundation already there. You can change this and personalize it so your family and friends know why The VEDS Movement is meaningful to you. Here is an example:
“For my birthday this year, I am asking for donations to The VEDS Movement, a division of The Marfan Foundation dedicated to saving lives and improving the quality of life of individuals affected by Vascular Ehlers-Danlos syndrome (VEDS).
The VEDS Movement’s mission means a lot to me. I hope you will consider contributing as a way to celebrate The VEDS Movement with me. Every little bit will help me reach my goal. I have included information about The VEDS Movement below.
The VEDS Movement’s mission is to save lives and improve the quality of life of individuals with VEDS. By pursuing the most innovative research, educating the medical community, general public and affected individuals, and providing support to patients, families, and caregivers, The VEDS Movement can charge forward and improve the outcomes for those living with VEDS. Learn more about the Movement at TheVEDSMovement.org”
4. Select a picture to use for your fundraiser.
5. Share the link to the fundraiser on your Facebook page, tell your friends about how you are “donating your birthday,” and watch the donations come in!
Virtual Benefit BINGO
Organize a virtual Benefit BINGO night with your friends and family, benefiting The VEDS Movement. Choose a theme for the evening and find fun facts to entertain your guests! We can help you organize the online event as well.
You can also attend one of our virtual Benefit BINGO nights to see how we do it!
Dimes/Pennies for VEDS
Dimes/Pennies for VEDS is a great way to get the community, especially kids, involved in a meaningful fundraiser. Challenge them to fill up a regular 20 oz bottle with dimes (it will hold $100) or pennies (it will hold $40) and have classrooms compete to see how many 20 oz bottles they can fill! You can also host this event in your place of work by spurring competition between departments or put empty bottles by the register in the cafeteria.
If you kick off the competition by explaining the cause and why it is so important to you, most people will raid their home drawers, closets, and piggy banks for dimes or pennies. Not only will they want to win the competition, but they will also want to participate in a cause that is important to someone in their community.
Plan a week or month-long competition and consider providing the winning class or department with a pizza party or baked goods. We can also provide swag to the winners.
Painting for VEDS
Painting nights are all the rage as for groups of adults (or kids) of any age. Typically, you pay a small registration fee and the venue, which provides all the painting materials, has an artist who shows you step by step how to create a picture. You’ll have a lot of laughs and be amazed at the painting you’ve created!
Many painting venues will arrange a special night for your group where they give a portion of the registration fee to your cause. By designating The VEDS Movement, you can raise money for our programs and services, including research.
There are painting places that have locations from coast to coast, including Paint Nite, Painting with a Twist, Pinot’s Palette, and Wine and Design. Check these out or search for another one in your area.
Remember, we are here to help, as always. Simply contact us at volunteer@marfan.org.
Dining for VEDS
Many restaurants and restaurant chains around the country offer the opportunity to support nonprofits. Usually, you apply to the restaurant and work with them to select a date. Then, they provide you with a flyer that promotes the charity night. You disseminate the flyer to your family, friends, and neighbors and, when they present the flyer at the restaurant on the day of your event, a percentage of what they spend at the establishment is donated to the nonprofit.
Here’s a list of many restaurants that hold fundraisers like this.
You may also speak to any local restaurant you frequent to ask if they can hold such a night for you.
This is a great way for your group to get together, raise awareness in your community, and raise some funds for the Movement.
Need assistance? Contact us at volunteer@marfan.org.
Awareness Table
Creating an awareness table and giving our information about VEDS is a great way to educate the public about this condition and potentially save a life. The Movement can provide you with materials to distribute, including fact sheets and swag (give-aways). You may also want to decorate with balloons, if they are permitted, to attract attention.
Sometimes, places in the community – such as a library, hospital, or mall – have health fairs where it is free or low-cost for a nonprofit to exhibit. They will have an agreement to be completed as well as set-up logistics to follow.
Please let us know as we need to sign all legal papers.
You may also choose to have an awareness table on your own, without a health fair. Having a “hook” is helpful, so consider these places where you have a personal connection, such as a work place, school, house of worship, doctor’s office, or hospital.
There’s no need to do this on your own! Recruit friends to help you (and we’ll share key messages about VEDS and related conditions so they are articulate in talking to visitors to your table). In addition, we can reach out to others in our community and tell them about your efforts. This is a great way to meet other people who are on the same medical journey and get help in a project that makes a difference in your own backyard.
Remember to publicize your awareness table to increase the impact. There are some simple steps you can take that will heighten awareness even more.
Please email us at volunteer@marfan.org to let us know if you are planning to create an awareness table. We can then share more about the logistics, help you publicize it, and answer any questions.
COOKIES 4 VEDS
Cookies4Cures is a nonprofit 501(c)3 whose mission is to empower kids to fund research into rare pediatric diseases by baking cookies. Dana Perella founded Cookies4Cures in 2017 when she learned that her dear friend, Mila, had a rare disease called Batten. Although she was only 7 years old, Dana started baking cookies and selling them out of her red wagon to raise money for Batten research. She was joined by friends, and soon she was holding cookie pop-ups throughout her town and connecting with the international rare disease community. Since those early days, her organization has grown to over a hundred volunteers who have baked more than 20,000 cookies, raised more than $150,000, and funded research into seven diseases…and counting! Cookies4Cures is an organization run by kids for kids, and we fund hope, one cookie at a time.
There are many options for community fundraisers and awareness; these are just a few!
For maximum impact, spread the word! Here’s how:
- Contact The VEDS Movement about sending an email to our community in your area. We can also share it on our social media.
- We can create a flyer for your event. Usually a pdf that can be emailed is ideal. In some cases, it’s helpful to have a printed flyer to post or distribute to your friends and family. If you are working with a restaurant or paint night venue, they may even create it for you. If so, contact us for use of our logo (we’ll have to approve how it’s used).
- Create (or ask us to create) an image with the details of your event that you can post on your social media (Facebook, Instagram, and Twitter). Post it frequently, tag the venue where it’s taking place to reach their followers, and tag your friends in the comments to get their attention! Post weekly and then the day before and day of the event. Don’t forget to ask the venue to share it on their social media too (and tag The VEDS Movement).
- If you are having a public event, you’ll want to send (email) details to your local media for their community calendar. Many news outlets and other community websites have online calendars and they make it very easy to submit your event details. You’ll want to do this as soon as you have the details for maximum impact. For print newspapers, a six to eight week lead time is common.
- Send personal emails to all your contacts – family, friends, neighbors, and co-workers. Tell them what’s going on and why it’s important to you. You can also share how the Movement will use the money (for programs, services, and research). If people know why their support matters, they are more apt to give.
- Take pictures at the event and share them on social media to extend your impact. Share them with the Movement, too. We can help you build momentum in your area.
For questions about The VEDS Movement Community Action Team or to simply let us know what event you are doing or how we can help, please email volunteer@marfan.org.
The Community Action Team is not the only way to raise awareness for The VEDS Movement! Check out our Social Media Awareness Team and our School Nurse Champion Team to learn more about how you can help raise awareness through social media or at local school nurse conferences.
