Endometriosis Foundation of America: ‚ÄčAn Online Patient Community

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April 2020
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Artwork: “Endometriosis Anatomy” by Jenna Wiebe of Duvet Days.
Endo & COVID-19:
EndoFound’s First Webinar

Margaret Cianci

Thank you to everyone who attended EndoFound's first webinar, COVID-19 & Endo. EndoFound Cofounder Dr. Tamer Seckin and journalist Sabrina Korber covered a wide variety of topics in a short time this past Sunday.  

Dr. Seckin discussed whether endo patients are immunocompromised, particularly if they've had a collapsed lung, how to manage pain and anxiety while social distancing, and the four absolute endo emergencies for which patients must seek immediate treatment.

Patient and author Eva Hagsberg joined the conversation to talk about contracting COVID-19 while recovering from her endo surgery. She gave us a glimpse into combating both of these diseases. Thank you, Eva, and we are sending healing energy to you!

This week, the EndoFound team is completing an online resource page on navigating this pandemic as an endo patient. We are also going to answer the many other questions that viewers shared in the webinar in an upcoming issue of The Blossom newsletter. If you missed the webinar, no worries, we have published it on our website, and you can watch it here

Please save the date for our next webinar on April 19th 2 PM (EDT), details to follow. 

As we navigate this pandemic together, EndoFound is committed to being there for you by answering your questions and creating a virtual community where we can lean on each other. Please email us your questions and concerns.

Be well,
Margaret Cianci

Executive Director, EndoFound

We need your support more than ever. For those you shopping from home using Amazon, we encourage you to use Amazon Smile and choose Endometriosis Foundation of America as your preferred organization as the proceeds will directly benefit our mission to get endometriosis patients the support they deserve. In addition, some companies such as Apple, General Mills, and United Health are expanding their matching gift programs. If you’d like to make a donation, check with your employer for a matched gift! 

Everyday Health Speaks COVID-19 and Endometriosis with Dr. Karli Goldstein
Reflecting on Patient Awareness Day 2019

Everyday Health spoke with Dr. Karli Goldstein, EndoFound Board Member and Associate Surgeon at the Seckin Endometriosis Center, on the most common and urgent questions concerning COVID-19 and endo. Dr. Goldstein, an endo patient herself, says endometriosis is a challenging chronic condition even in the best of times. Read her expert recommendations for managing endometriosis during this difficult time.

If you have more questions, please join our Twitter Chat this Thursday (4/9) at 1 p.m. (EDT), with the hashtag #EveryDayEndoChat to discuss how the coronavirus pandemic will impact ongoing endometriosis treatment. Dr. Karli Goldstein, Endometriosis surgeon and EndoFound Board member, and Dr. Michael Nimaroff, Senior Vice President and Executive Director of Ob/Gyn at Northwell Health, will answer all your coronavirus questions. The Twitter Chat is sponsored in partnership with Everyday Health, and the Society for Women’s Health Research will also participate. We appreciate their support. 

The First Congressional Endometriosis Caucus in U.S. History

Tamer Seckin, MD, Cofounder, EndoFound; Iowa Congresswoman Abby Finkenauer, NY Congresswoman Kathleen Rice, Madeleine K. Rudin, Board of Directors, EndoFound

Few people outside of family and friends knew that Congresswoman Abby Finkenauer (D-Iowa) had been living with endometriosis until she courageously shared her story for the first time in early March on the floor of the U.S. House of Representatives. Since then, she has formed the first congressional endometriosis caucus in U.S. history and has requested $26 million from the National Institute for Child and Human Development (NIH) to fund research. 

Additionally, the request would direct the Department of Defense to make sure that endometriosis remains eligible for federal funding under the Peer-Reviewed Medical Research Program.

With the caucus, Congresswoman Finkenauer aims to “end the stigma around endometriosis and bring more attention to this condition affecting millions of women and their families and their friends.” Visit this page to read more about her story here and to watch her floor speech. Want to join the movement? Please visit this page!

Alaia Baldwin Opens Up Her Journey with Endometriosis
Reflecting on Patient Awareness Day 2019

Everyday Health spoke with EndoFound Junior Board member Alaia Baldwin on endometriosis, advocacy, and how she aims to foster an online community with other endo warriors. From opening up about “endo belly” and giving personal tips from her endo journey on Instagram, Alaia is resolute in her mission to help other endo patients feel less alone and to keep fighting for the right treatment and diagnosis.

“If you know something’s wrong, then it’s wrong. Keep looking for doctors or people you can talk to and people who will listen to you,” Alaia says. “That is the number one most important step to living a better life through chronic pain — getting the right treatment and diagnosis.”

Alaia also wrote the courageous and inspiring foreword to Dr. Tamer Seckin’s new book, Endometriosis: A Guide for Girls, which is dedicated to young women who are experiencing pain. The proceeds from Dr. Seckin’s book, which was released on March 17th, will be donated to EndoFound to further our mission.

Our Infertility Journey: Kaitlin McFarland’s Endo Story
Reflecting on Patient Awareness Day 2019

In Endo Stories, Kaitlin McFarland details her journey with infertility. Countless doctor visits and difficulty getting pregnant led Kaitlin to finally receive an endometriosis diagnosis. Now, she is ready to share her story in order to inspire hope for everyone who suffers in silence. “We shouldn't do this alone,” Kaitlin writes. “Although we sometimes end up feeling more alone when we share our stories, our words give voice to those suffering in silence.”

Read Kaitlin’s full story here. And remember, you too can share your story. We need your voices now more than ever. Either visit this page for further details, or email writers@endofound.org.

Calling all Gamers!
Reflecting on Patient Awareness Day 2019

The Endometriosis Foundation of America (EndoFound) is looking to partner with online streamers to raise awareness and funding for medical research for endometriosis! Funds raised by Team EndoFound streamers go towards supporting our programs aimed at building awareness, funding innovative research, and advocating for the 10 million women in the US with endometriosis. Please complete this interest form and we will contact you as soon as registration is open. 

Her Fight is My Fight

Margaret CianciEndoFound's Her Fight is My Fight t-shirt is for sale for those of you supporting a loved one with endo. We've extended our t-shirt fundraiser until April 20th. To learn more or to purchase a shirt please visit this page.

The ENPOWR (ENdometriosis: Promoting Outreach and Wide Recognition) Project, EndoFound's school- and community-based education program, is about to enter its sixth year! Educating over 35,500 students worldwide, ENPOWR's Endo EduKit relies on volunteers to bring our endometriosis lesson into local classrooms. Check out our ENPOWR Map to see where we've been! Don't see your hometown? Apply to be a volunteer endo educator and bring this critical endometriosis education to the students in your neighborhood.

Thank you to everyone across the country who has fundraised in support of endometriosis! From birthday fundraisers 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.

The Endometriosis Foundation of America
The Endometriosis Foundation of America has two urgent goals -- to spread awareness about endometriosis and to find better options for diagnosing and treating the disease. Honor someone in your life who has been touched by endometriosis by donating today! Your donation funds an aggressive agenda including educating youth through our ENPOWR™ (ENdometriosis: Promoting Outreach and Wide Recognition) program, funding landmark endometriosis research, and educating medical professionals.
You can make a general donation, a matching grant, a tribute, support a Team Endo Marathon runner or EveryDayHero fundraiser.
The Endometriosis Foundation of America is a 501(c)3 nonprofit, tax-exempt organization designated by the Internal Revenue Code.
Donate Now!

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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Endometriosis Foundation of America
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Disclaimer: The information contained on the Endometriosis Foundation of America ("EndoFound") web site and social media is provided for your general information only. EndoFound does not give medical advice or engage in the practice of medicine. The EndoFound under no circumstances recommends particular treatment for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.

References to any entity, product, service, or source of information not related to the EndoFound in this site should not be considered an endorsement, either direct or implied, by the Endometriosis Foundation of America. The EndoFound does not recommend or endorse any specific tests, products, procedures, opinions or other information that may be provided on any linked web sites. The linked web sites may contain text, graphics, images or information that you find offensive. EndoFound has no control over and accepts no responsibility for such materials.

We hope that you find endofound.org useful in providing information and in helping you make your own health care decisions.