CHES Community Newsletter!🩸💜👑

Hi,
You may have seen by now, CHES is unable to provide After the Shock Inhibitor Family Camp to the inhibitor community. This was a deeply difficult and necessary decision based on insufficient funding. Thank you to each person who has reached out to share their concerns about this unexpected change to CHES programming and who spoke from the heart about the impact of camp. Believe me when I say we are reading each and every message closely and will continue to fight for the return of Inhibitor Family Camp.

As promised, we are offering an extra day of programming at InhibitCon in New Orleans on September 10-13, 2026. Applications will open for InhibitCon in the 2nd week of June. We have many fun, engaging and educational camp like activities planned for Friday while we are in New Orleans and hope all our inhibitor families are able to join us for this great event! We value the funders who allowed us to transfer our limited ATS funds to Inhibitcon, thank you.

Inhibitor Family Camp began in 2010 by CHES in response to the community’s need for increased intimate connections and education. A “camp to call our own”, for those of us living with inhibitors to share the realities of our lives. The emotions we don’t or can’t share: pain, fear, anger, anxiety, depression, isolation and frustration. The battles with insurance, schools, family, and sometimes our healthcare professionals. Somewhere between camp arrival on Friday evening and departure on Monday morning, we become the family we didn’t know we needed-Hemohana.

At camp, we normalize the heavy emotions, acknowledge that they are normal when managing a chronic disorder where we seldom have control. And then, we turn them into triumph, strength, resilience. Children find peers, siblings bond, and the teens, they find their blood brothers for life. Hope and joy springs from camp-memories that get us through the dark times in the year.

Camp builds social resiliency, independence, face to face connections not achievable behind a keyboard or screen. When you live in a medically complex family, camp is a lifeline.

CHES continues to work with our funding partners to demonstrate the impact and value that Inhibitor Family Camp brings to inhibitor families. Please raise funds, talk to your local rep, and share a testimonial about what camp means to you. The CHES team deeply appreciates your help and support. Advocating and supporting the CHES community and each other is what we do!

Janet, Eric, Heather, Chris and Joan

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.

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