CHES Community Newsletter!🩸💜👑

In the last two editions of the Digital Digest, I wrote about funding which can also be described as relationship building. Relationships are the currency of the bleeding disorder community. Since it is International Women's Month, I am taking some space to show my appreciation for my relationships with several women in this community. These relationships are foundational; they've taught me so much about this community, myself, how we show up for each other, and the power of women when we lift each other up. I am quite sure I am forgetting someone - please know it's not intentional.

First and foremost, always and forever in my heart, is Anneliese Seitz-Mund. Anneliese was the very first hemophilia mom to bring me under her wing. She had a huge heart and endless kindness. She was taken way too soon but left a lasting legacy with her children and with every single person who was lucky enough to cross paths with her. Other incredible women who are absolute gems of human beings include, Janet Brewer, Joan Ward, Laura Kinson-Curtin, Nelly Miranda, Kathy Byrne, and Brianna O'Neil. I encourage you to take some time today to thank a woman who inspires you.

As CHES stands strong on our 3 pillars: women, the inhibitor community and ultra-rares, we need each other and we need your help.

Travel Fund aka CHES Champions

In 2026, CHES is asking all participants who are financially able to cover the cost of overnight hotel rooms for in person CHES experiences. We know based on years of feedback that people would like to contribute to further CHES’s vision. CHES Champions is set up for donations of any size. With a little love, we can ensure that all of our community members have equitable access to be seen, heard, and supported.

$50= covers the cost of one breakfast meal for one attendee

$150= covers a portion of our educational costs

$250= covers the cost of a child at a hotel event for a day (food and childcare activities)

$500= covers the cost of lodging for one attendee or one family for an event weekend

Tax deductible donations can be made to the CHES Champions fund. CHES Champions helps to cover travel costs for our community members who would be unable to attend events without financial assistance.

The Hermanas de Sangre webinar, "Sanación y Autocuidado" presentado por Dr. Johayrs Aybar, was incredible. Stay tuned for a recording on the CHES YouTube channel soon.

In the meantime, use the link below to sign up for Hermanas de Sangre and receive details on the next session. If you have already signed up for Hermanas de Sangre, there is no need to sign up again.

Hermanas de Sangre Campaign — CHES Foundation | Rare Bleeding Disorders

SAVE THE DATES! - CHES 2026 IN PERSON EVENTS!

CHES remains dedicated to offering high quality education and connections with ultra-rares, women and the Inhibitor Community.

Applications open 8-10 weeks prior to the event. Please stay tuned to CHES social media (Facebook and Instagram) and our LinkedIn profile to watch for open dates. Applications will also be linked to this regular Digital Digest as they open.

One Drop: Tampa, FL- February 27-March 1, 2026 (postponed from November 2025) In the books!

CHES recently hosted our OneDrop conference for the ultra-rare community. The conference was a huge success. Thank you to everyone who contributed- patients, caregivers, siblings, volunteers, staff, funders, and speakers!
A special shout out to our Glue Crew: Audriyana Jaber, Ismael Jaber, and Lavang Vu!

LadyBugs National Women's Conference: Colonial Williamsburg, VA- April 24-26, 2026 in partnership with the Virginia Bleeding Disorders Foundation (formerly Virginia Hemophilia Foundation)- Acceptance and waitlist information has been sent out. Please check your spam folder if you did not receive an email.

InhibitCon: New Orleans, LA, September 10-13, 2026 *First day is Leverage in partnership with GutMonkey and camp like activities for families.

OneDrop 2026: Tampa, FL, November 13-15, 2026 *note new dates

CHES Updates: ATS Inhibitor Family Camp News

We are deeply disappointed to share that for the first time since 2009, CHES is unable to provide After the Shock Inhibitor Family Camp to the inhibitor community. This was a difficult and necessary decision based on insufficient funding.

We will offer an extra day of programming at InhibitCon in New Orleans in September. Please stay tuned to CHES Social Media channels (Instagram, Facebook and LinkedIn) as well as our Digital Digest to learn when applications open.