Endometriosis Foundation of America: ‚ÄčAn Online Patient Community

Margaret Cianci

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We’re excited to share huge news for the endometriosis community: yesterday, Rep. Abby Finkenauer’s amendment to double federal research for endometriosis passed through the House of Representatives, increasing research funding from $13 million in 2019 to $26 million for 2020. 10 years ago, few people even knew what endometriosis was. Now, this critical funding can help millions of women affected by this disease. Thank you to everyone who has spent the last decade working for endometriosis awareness. We have more work to do together.

For the past four years, Endofound has been a proud partner of the TCS NYC Marathon. This year we had a record number of spots in the race, which would have allowed us to raise over $150,000 for funding research on endometriosis, getting us closer to a cure. But while the NYC marathon was cancelled due to the pandemic, endo, unfortunately, is not.

Together, we can still work to End Endo. Join us on August 22nd and 23rd for a 5K fundraiser to raise $25,000. Whether you walk, run, bike, hike, or swim, you can raise critical funds to benefit endometriosis research, advocacy, and education.

Here at EndoFound we are working hard behind the scenes to bring you more programming and support. I am very excited to announce our virtual Patient Day this October 15th-18th, rescheduled from March due to the pandemic. EndoFound has been holding conferences for patients, doctors, and researchers in endometriosis for the past decade, and Patient Day is a time for our community to come together. We are very excited to bring you patient panels, informative keynotes as well as fun happy hours with mocktails and opportunities to meet each other virtually. This is being planned by patients for patients. More details will follow, but please save the dates.

Read on for a new donor spotlight from a marathon runner who is nonetheless fighting for individuals with endo despite the cancelled race, an EndoNews article on suggested therapies for endo patients during the pandemic, and a delicious endo-friendly recipe by Tiffany Silvera.

In community,
Margaret Caspler Cianci

Executive Director, EndoFound

Endo Tip of the Week:
The Endo Diet

Before attempting new pain management options, please consult your doctor to ensure your management plan fits your case. These tips are not meant to replace proper treatment.

An anti-inflammatory diet can help to ease endo symptoms. The first step? Listen to your body and monitor what foods make you feel good or in pain. Try keeping a food log and record how you feel after you eat for 14-30 days. Note foods that may not make you feel well. Test avoiding those foods to see if it helps with your pain levels.  Thank you to Natalie B., Isabella D., Tanya R., Annie B., Kate H., Shweta S., Femke V., Kerri R., Susan S., and Gina B. sending in this recommendation to our Endo Tip Jar.

U.S. House Approves Doubling Funding for Endometriosis Research to $26 Million Annually

Thank you Congresswoman Abby Finkenauer, chairwoman of the House Endometriosis Caucus, for your critical work! Federal research funding for endometriosis has now been doubled from $13 million in 2019 to $26 million for 2020. EndoFound is honored to have worked on the first ever endometriosis caucus, the #UpEndo Campaign. Together, let’s get the research we need to find a cure.

Learn More
Walk, Run, Hike, Bike, Swim: Get Moving to End Endo!

Team EndoFound is off and running, raising money to find a cure for endometriosis. You can join them for the End Endo 5K on August 22nd and 23rd! Find your own 5K course (3.1 miles) to walk, run, hike, bike, swim or even dance to End Endo. And you can double your impact! If we raise $25,000, it will be matched dollar for dollar. Your support is more important than ever. Together, let’s raise enough money to get the research we need for a cure. Learn more about Team EndoFound and the impact your fundraising will have today.

Join the End Endo 5K
Suggested Management Tips for Endo Patients During the Pandemic

How should endo patients manage their pain during this stressful time? EndoNews covered a research article by Dr. Leonardi and associates which proposes expert opinion-based self-management guidance for endometriosis patients. These suggestions include social support, sleep, physical exercise, yoga, pelvic exercise with physiotherapy, diet, heat, relaxation and mindfulness, and acceptance and commitment therapy. The authors recommend combining these with medical management strategies prescribed by your doctor.

Learn More
An Endo-Friendly Recipe from Tiffany Silvera

Tiffany Silvera is an endo patient, nurse, and first-generation Jamaican-Portuguese American who loves cooking. “Changing my diet,” Tiffany says, “was the best thing that happened for me which has improved my symptoms.” Tiffany’s go to endo-friendly recipe? The Yummy in my Tummy Plantain and Shredded Chicken Soup. “Plantains are a staple in Caribbean cooking. Not only does it taste amazing, it also provides the following health benefits: fiber, potassium, immune boosting, as well as promotes healthy brain function.”

Try Tiffany’s Recipe!
Donor Spotlight: Robert Frederick

Robert Frederick first ran for Team EndoFound to honor the women he knew with endometriosis. Robert wanted to increase EndoFound’s education program so others wouldn’t have to wait years like his friends did for a diagnosis. “When a complete stranger told me that my fundraising messages (spread through social media) got her to ask her doctor about endometriosis,” Robert says, “and it was because of that she finally got a diagnosis, I understood just how much more educational outreach still needs to be done.” While in-person marathons across the world are cancelled, endo is not. Sign up for the virtual End Endo 5K today. 

Join the End Endo 5K!

Mark your calendars for EndoFound’s virtual events planned for 2020. We’re looking ahead to 2021, too!

To create your own birthday fundraiser, you can follow this link to EndoFound’s Facebook today! From birthday fundraisers on Facebook to running 5Ks, you make it happen. With your help, we can continue working towards increasing endometriosis awareness, education, advocacy, and research. Thank you to everyone across the country who has fundraised in support of endometriosis!

Follow the EndoFound on social media and be the first to hear about new research, program updates, or different ways to get involved. Our platforms provide a safe and supportive environment to connect people from around the world. Please visit our Facebook, Twitter, or Instagram and give us any feedback you may have by commenting on our posts or direct messaging us!

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