September is Desmoid Tumor Awareness Month. This campaign was founded in 2016 by a woman named Angela who decided to use her experience with desmoid tumors to start a Facebook page to share people’s stories. Since then, it’s grown into a worldwide event.

Desmoid Tumor Awareness Month is the perfect time to learn more about this rare disease and raise awareness in your local community and beyond. If you want to get involved but aren’t sure where to start, this list can give you some ideas for bringing desmoid tumor research and advocacy into focus.

1. Boost Your Knowledge

Desmoid tumors are very rare: Each year, only 2 to 4 out of every 1 million people worldwide are found to have a desmoid tumor. As a result, most people don’t know anything about desmoid tumors unless it affects them or someone they know directly. If you or someone close to you is dealing with a desmoid tumor, you’ll probably want more information about things like risk factors, treatment options, and recurrence rates.

Fortunately, there is a lot of information available for those who want to expand their knowledge of desmoid tumors. Credible websites, such as the National Cancer Institute and the Desmoid Tumor Research Foundation, offer statistics and research that can be helpful for educating yourself and others. Take some time this September to learn about the latest advancements for people with desmoid tumors.

2. Inform Your Network

Once you brush up on your desmoid tumor knowledge, you can use social media to post about desmoid tumors and share information with others. Doing so can help others understand the condition and may even improve the chances of early diagnosis and screenings.

Not sure what to post? You can share content from the Desmoid Tumor Research Foundation, which spends the month of September sharing facts about the condition and stories of people who have or who care for someone with desmoid tumors. You can simply reshare their stories or tell your own by submitting it to their website.

If you like writing and want to share your experience, you can also send a letter to the editor of your local newspaper. Discuss how desmoid tumors have impacted your life and what awareness month means to you.

3. Attend an Event

Each September, the Desmoid Tumor Research Foundation hosts the Together We Will weekend conference. This event, which takes place in different parts of the United States, features informational workshops, fun activities, and networking opportunities.

The weekend concludes with the Running for Answers (RFA) Walk. This 5K and fun run has raised over a million dollars for desmoid tumor research and advocacy since starting in 2009. You can join in person or register virtually for the weekend’s festivities. Attending the conference and hearing from experts is a great way to get inspired by the strides being made in desmoid tumor research.

4. Wear Your Support

The Desmoid Tumor Research Foundation offers awareness bracelets with their website URL. If you donate at least $50, they will send you up to 20 bracelets. These bracelets can be a great addition to any fundraising event. You can also distribute them along with an informative pamphlet about desmoid tumors outside of your local grocery store or another public venue (with permission from the business owners). Don’t forget to include a collection box for potential donations.

If you’re crafty and prefer to make your own awareness merchandise, the possibilities are endless. Buy letter beads to design your own bracelets or keychains for Desmoid Tumor Awareness Month. Point people to the Desmoid Tumor Research Foundation website by making shirts advertising the site — you can do this by purchasing white T-shirts and ironing on letters. You can even host an after-school or weekend event where participants can dye or decorate the shirts for a small fee. Set it up in a local park, play some music, and display a desmoid tumor awareness banner so everyone knows the purpose of the event.

5. Organize a Fundraiser

Along with participating in and raising money for the RFA walk, you can set up fundraisers to supply resources, help with desmoid tumor medical bills, or support research. Some ideas for effective online or in-person fundraisers include:

• Hosting a theme gala — Create a buzz by organizing a fun party where guests purchase tickets and buy raffle tickets.
• Running a charity auction — Ask local vendors to donate items like dinner packages, spa gifts, or housecleaning services, and auction them off at a local event space.
• Setting up a crowdfunding campaign — Use an online platform to share compelling stories, spread awareness, and collect donations.

You can also arrange matching programs for your fundraising events to maximize the money raised. Both large corporations and small businesses may be willing to match a percentage of your profits. Reach out to different businesses by sending letters or emails or making phone calls to see if they are interested in supporting this good cause.

6. Connect With the Community

Since desmoid tumors are so rare, it’s unlikely that you’ll find people nearby who are facing a similar situation. However, there are strong online networks that help connect people with desmoid tumors from all around the world.

Studies show that people with rare diseases benefit from connecting with others online. Online communities can offer valuable information and support. They also help promote better mental and physical health. While your oncologist should always be your primary source of medical information, getting involved with desmoid tumor networks online can be a beneficial step to take this September.

Talk With Others Who Understand

MyDesmoidTumorTeam is the social network for people with desmoid tumors and their caregivers. Members from around the world come together to ask questions, offer support and advice, and connect with others who understand life with desmoid tumors.

Have you found ways to spread awareness about desmoid tumors? What resources, activities, or organizations do you find most helpful? Share in the comments below, or start a conversation by posting on your Activities page.