CHES Community Newsletter!🩸💜👑

Take Space, Make Space

Recently I have been giving a lot of thought to how we all take and make space, in our communities, in our families, in our closest relationships. I am definitely guilty of the deflection move. I tend to share details with my close friends and colleagues but often gloss over the tough parts or ask a question to avoid a larger reflection on my own state.

The above image I saw on LinkedIn, and it resonated. The way we show up for each other- mom to mom, friend to friend, peer to peer- is crucial. Time and time again I've witnessed community showing up to hold space or call attention to someone or something that requires our attention. And as my favorite virtual yoga teacher, Adriene, says, "Where attention goes energy flows."

This is a heat wave motivated ramble and way to say- let's take notice. Of ourselves, each other, the community and try to make space for those who need it most. Keeping in mind that person that needs it most might be you!
Be kind,
Heather
*I I first heard the "Take Space, Make Space" phrase on a virtual conference call with GutMonkey circa pandemic era. Thanks for letting me borrow, GutMonkey!

InhibitCon, Leverage, and Inhibitor Family Camp applications are open! SPACE IS FILLING UP- APPLY TODAY!

LEARN MORE & APPLY
Please join us for InhibitCon in New Orleans, September 10-13, 2026! We will have camp activities on site on Friday during the day as well as the Leverage program, facilitated by Gut Monkey, for adults 18+ with an active inhibitor. The full InhibitCon experience will begin Friday late afternoon.
This is an incredible opportunity to meet other inhibitor families, build community, and learn from the top Subject Matter Experts in the field! Sessions cover Insurance, Physical Therapy, Intimacy, and Current and Emerging Therapies. This is a not to be missed experience!

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 next session of Hermanas de Sangre will be presented by Dr. Vanessa Salinas and will focus on how to talk with your healthcare provider. This session is open to all members of the Latino community, females AND males! Join us on Tuesday, July 28th at 8:00 PM ET/7:00 PM CT/6:00 MT/5:00 PT.

Use the link below to sign up for Hermanas de Sangre. If you have already signed up for Hermanas de Sangre, there is no need to sign up again.

Hermanas de Sangre is made possible from a grant from Sanofi. Gracias a Sanofi!

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.

InhibitCon: New Orleans, LA, September 10-13, 2026

*First day (Thurs., 9/10) two tracks will be ran concurrently before InhibitCon begins on Friday:

Adults w/ inhibitors - Leverage, in partnership with GutMonkey
Children w/ inhibitors - Camp-like activities for families

APPLICATIONS ARE OPEN!

OneDrop 2026: Tampa, FL, November 13-15, 2026
(for individuals with ultra-rare bleeding disorders)

CHES News
Are you a female aged 19+ with a diagnosed bleeding disorder or seeking diagnosis? If so, please join us for the next BFFF (By Females for Females) webinar! The session will focus on Iron Deficiency Anemia and bleeding disorders and led by Liz Richard, MS RDN LDN CNSC. The webinar will take place on Tuesday, 10/20 at 8PM ET. Sign up to receive BFFF notices here.

CHES Foundation, Inc is looking for additional engaged, enthusiastic working board members to support our programs and services that our families have come to trust. Board members are asked to participate in a minimum of 3-4 quarterly conference calls per year, and up to 3-4 standing monthly committee meetings, which occur outside of regular board meetings (this can happen by phone or internet). Interested in making this commitment to CHES Foundation? If you have questions about the board opportunity, please contact Janet Brewer, Director Emerita, directly at jbrewer@ches.education.

Applications are open and available here

Glanzmann's Thrombasthenia

The Bleeding Edge is the first podcast series dedicated to exploring Glanzmann Thrombasthenia through the voices of patients, caregivers, and clinicians. Across four narrative-driven episodes, the series moves from recognition of the condition, to its full day-to-day impact, to the realities of navigating care, and finally to a reframing of what current and future care should look like. Together, the group explores what resonates, what feels incomplete, and what still needs to change in how Glanzmann thrombasthenia is understood, discussed, and addressed.

This is not about reaching a single conclusion. It is about putting experience into the same room, making it visible, and allowing it to be heard across perspectives that are rarely connected in one space

The series concludes with a live virtual round table on August 18th at 7:00 AM PT, hosted on Zoom, bringing together patients, caregivers, and clinicians from across the GT community. We want your voice in the room!