Endometriosis Foundation of America: ‚ÄčAn Online Patient Community
Artwork: "Endometriosis Anatomy" by Jenna Wiebe of Duvet Days.
Funding Critical Research that Could One Day Lead to A Cure

Margaret Cianci

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As we continue living in a world that calls for social distancing and the wearing of masks, we're pleased to see that the endo community is virtually engaging and continuing to support one another. Now more than ever we need to make sure our EndoFound family is strong!

Thank you to everyone who participated in our survey and shared how you're managing during this difficult time. Your ideas, concerns, words of wisdom, and hope are essential for all of us to hear during both good and challenging times. Please continue to share with us so that together we can build a stronger and more resilient endo community.

We are excited to bring you continued programming in the weeks ahead. Look out for more information on our upcoming webinars, a new series of virtual classes, and an exciting new grassroots campaign to support women during the COVID-19 crisis. Stay tuned!

As so many of you know and have demonstrated with your ongoing support, researchers are making inroads to understanding, diagnosing, and treating endometriosis better. Over the past two months, we've been interviewing endometriosis researchers who have received EndoFound research grants to give you an inside look at what they're working on and why they're passionate about their endo research. This week, we're spotlighting the work of Ie-Ming Shih, M.D., Ph.D., at Johns Hopkins School of Medicine and how the $25,000 EndoFound grant contributed to his research receiving a $3 million NIH grant earlier this year. Dr. Shih is doing amazing work!

Thank you to all of our endometriosis researchers, and thank you, our donors, who seed these crucial grants. The dollars you donate directly fund critical research that could one day lead to a cure. Every donation, no matter how small, makes a difference in the lives of endo patients. 

As spring turns to summer let's put our heads together and think of some ideas for keeping us together (and cool) through the busy summer months. The endo community is full of inspiration so send over your ideas. You can email us at generaladmin@endofound.org. Thank you!

Donate Today!

In community,

Margaret Cianci
Executive Director, EndoFound

Everyone is shopping from home these days. It's our new norm for the time being. When shopping with Amazon, we ask you to please consider using Amazon Smile to support EndoFound. We receive a .5% donation from all qualifying purchases if you select us as your charity. Remember that you have to login at smile.amazon otherwise if you go straight to Amazon you’re not donating. You can also simply follow this link: https://smile.amazon.com/ch/20-4904437

How EndoFound's $25,000 Research Grant Led to a $3 Million NIH grant

The federal government gave only $13 million to endometriosis research in 2019, despite 1 in 10 US women having the disease. This funding equates to less than $1 per year for each diagnosed patient. Although the disease continues to be critically underfunded, EndoFound is proud to have had a hand in recent victories.

In 2018, Ie-Ming Shih, MD, Ph.D., the Richard TeLinde Distinguished Professor in the Department of Gynecology and Obstetrics at the Johns Hopkins University School of Medicine, received an EndoFound research grant for $25,000 to pursue cancer-associated mutations in endometriosis. This seed grant had an exponential effect: the following year, Dr. Shih and Dr. James Segars, in collaboration with Dr. Hugh Taylor at Yale School of Medicine and Dr. Kevin Osteen at Vanderbilt University Medical Center, successfully secured a National Institute of Health (NIH) research grant to study the pathogenesis of endometriosis for approximately $3.5 million.

Dr. Shih is excited for this award of over $3 million, and hopes it will result in better diagnosis and treatment for women with endometriosis. Collaboration between researchers, institutions, and funders is critical to the advancement of endometriosis research. We would not have been able to seed such a grant without the endometriosis community’s support. Consider making your donation today.

Read about the NIH Grant
How to Navigate Sex with Endometriosis

Over on The Blossom Blog, endo patient, advocate, and writer Ellie Hurley interviews experts on how to navigate painful sex as an endometriosis patient. Some helpful recommendations? Open communication, tracking your cycle, and keeping a journal to track your pain.

In addition, if you’re experiencing painful sex after endometriosis lesions are successfully removed, it's natural and common for your body to tense up in response and the pelvic floor to tighten in anticipation of pain you had before. Dr. Karli Goldstein of Seckin Endometriosis Center suggests working with a sex therapist or pelvic floor therapist to learn how to recalibrate and down-regulate that response and help you to be comfortable again.

Read Here

Be sure to check out Ellie’s powerful Endo Story that we published in March! Do you have an incredible story about your endo journey to share with the world? Please send an email to writers@endofound.org to have your piece considered for publication on EndoFound.org’s EndoStories section.

Researcher Spotlight: Dr. Rama Kommagani

Dr. Rama Kommagani, Assistant Professor in the Department of Obstetrics & Gynecology at Washington University School of Medicine St. Louis, joined EndoFound for a Researcher Spotlight with Deniz Kocas, EndoFound Research Advisor. Dr. Kommagani discusses how his research on genetic mutations in endometriosis, funded with $25,000 by EndoFound in 2018, can shed light on the development of new diagnostic tools and treatment for endometriosis. Furthermore, his other projects on the gut microbiome have demonstrated that just like environmental and genetic factors, specific bacteria from the diet we consume can impact endometriosis disease progression. Throughout the interview, Dr. Kommagani emphasizes the heterogeneous nature of endometriosis and that future research needs to address the diversity of the condition. He closes by noting that more collaboration and funding is necessary to advance endometriosis research.

Watch Dr. Kommagani’s Interview

Subscribe to EndoNews for the latest in endometriosis research from around the world.

Spotlight on Endo Advocates: Kristy Curry

For 20 years, EndoFound board member Kristy Curry suffered from chronic endometriosis pain and finally found relief after excision surgery and lifestyle changes. Freed from the burden of her chronic pain, she set out to help other endometriosis sufferers find true relief. 

"I was always looking for self remedy, support from a doctor and a community while dealing with endometriosis."  To this end, Kristy created the Flutter Health app to help girls, women and people with uteruses screen for endometriosis, manage their symptoms and connect with peers and care providers for guidance and support. 

To date, the Flutter Health app has helped over 60,000 people. The app is entirely free and can be downloaded for iPhone at https://www.flutterhealth.com/.

Learn more about Flutter Health
Spotlight on Endo Artists: Paige Johnson

Paige Johnson is a Pennsylvania-based artist inspired by a background in biology and an appreciation for nature. Floral Pelvis was inspired by her search to find meaning in her battle with endometriosis. “While endo has taken so much from me,” Paige says, “it has in return given me resiliency, strength, and access to an amazing community. This journey has shown me that no matter how hard things may get, hope can still blossom.”

Paige submitted this piece with EndoFound because she wanted to share her story so that other women would know they’re not alone. “My endometriosis journey started the same as many others,” Paige says, “crippling periods starting at an early age and doctors coldly dismissing my pain. I was finally diagnosed with endo in 2018 after begging my doctor to perform the diagnostic surgery. While I finally received my diagnosis, my journey was far from over. My surgeon had performed ablation, which unfortunately left me with lots of remaining pain and issues. In 2019 I finally had enough and thankfully found an incredible doctor that listened to me and after reviewing my options with him, I decided to have a partial hysterectomy and excision surgery to address my endometriosis and adenomyosis. Due to my delay in treatment, I now suffer from permanent nerve damage, interstitial cystitis and many other conditions related to endo. It took me over 10 years to get my diagnosis - which is unacceptable in today’s modern world.”

Thank you, Paige, for your artwork, and for courageously sharing your story. To purchase a print of Floral Pelvis, check out Paige’s Society6 page!

Share Your Endo Story!
Calling All Performers, Artists, Streamers, and Content Creators!

EndoFound is now on Tiltify, the number one site for DIY fundraising. Raise money by doing something you love. Challenge your friends. Be creative. Put the fun back in fundraising. Funds raised go towards supporting awareness programs, innovative research, and advocating for the 10 million women with endo.

Did you sign up and want to share your story? Please email info@endofound.org for the chance to have your story featured on The Blossom, or if you have any questions.

Fundraise on Tiltify!

Thank you to everyone across the country who has fundraised in support of endometriosis! 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. To create a fundraiser, please visit our Everyday Hero page or set up your fundraiser on Facebook.

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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