CHES Community Newsletter!🩸💜👑

Hi All, Heather is on a much needed vacation so this is a special Chris edition! We hope many of you had the chance to see Eric and Heather last weekend at NBDC!

I want to use this opportunity to talk about advocacy. I know we hear that word quite a bit in the bleeding disorder world as it applies to a multitude of different situations. In our community, we use it to step up for ourselves in the medical space to secure a diagnosis and receive treatment that we often desperately need. Advocacy has a web of attached terms like mental heath, daily needs, careers, family, respect, ethics and manners. I could go on with how many things in our life that we need and how we advocate for them.

But I want to talk about advocacy for others. Not for your family or for your friends but for your fellow human that you may not know or know well. A neighbor, a co-worker, a person in line with you at the grocery store. With each new year on this earth it seems like a new season of a show that continues to push the extremes and limits of our values, ethics and morality. Heather often speaks about being kind to each other, I ask for you to take it a step further. Advocate not just for yourself or family, advocate for those who CAN'T do it for themselves. Stand up when you see injustice. Point out when rights and privacy are being violated. And BE LOUD. Be a good human, hold yourself and others to ethical and moral standards that eliminate hate, racism and xenophobia. Advocate for transparent truth while correcting mis and disinformation. If no one steps up, who will? Be that person and others will stand with you, make the diffusion of responsibility disappear. I know I'm standing on a soap box here but it costs nothing to be kind. ♥️

Keep this in mind as we start a new school year and the changes that come with fall,
Your fellow human, Chris

InhibitCon, Leverage, and Inhibitor Family Camp applications are open until Sunday August 23 at Midnight EST. Apply NOW!

LEARN MORE & APPLY

InhibitCon is coming to New Orleans! 🎉

Join us September 10–13, 2026 for an unforgettable weekend designed specifically for inhibitor families!

We’re kicking things off Friday with camp activities during the day, plus the Leverage program, facilitated by Gut Monkey, for adults 18+ living with an active inhibitor. Then, in the late afternoon, the full InhibitCon experience begins!

✨ Connect. Learn. Grow. Belong.

InhibitCon is your chance to meet other inhibitor families, build lasting connections, share experiences, and learn from some of the leading Subject Matter Experts in the field.

You’ll have the opportunity to dive into important topics including:

Insurance & navigating coverage
Physical Therapy & movement
Intimacy & relationships
Current & emerging therapies

Whether you’re looking to connect with others who truly get it, expand your knowledge, or stay on top of the latest developments in inhibitor care, InhibitCon is an experience you won’t want to miss!

📍 New Orleans | September 10–13, 2026

Come for the learning. Stay for the community. Leave feeling connected, empowered, and inspired.

We can’t wait to see you at InhibitCon!

Dr. Vanessa Salinas presented on how to talk with your healthcare provider in a highly popular session of Hermanas de Sangre. The session was recorded and is available on CHES's YouTube channel. Here is the link: https://youtu.be/nq3Fbcf1uy8

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

To sign up for Hermanas de Sangre updates please visit:
Hermanas de Sangre Campaign — CHES Foundation | Rare Bleeding Disorders

One Drop 2026 in Tampa is fast approaching! Are you affected by an ultra-rare bleeding disorder? This conference is for you! Make sure you're signed up with our communications profile to receive the opening of applications on August 27th! A list of Ultra-Rare conditions can be found at https://ches.education/one-drop

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 on Facebook, Instagram and LinkedIn to watch for open dates. Applications will also be linked to this regular Digital Digest as they open.

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.

Transcutaneous auricular neurostimulation (tAN) and transcutaneous auricular vagus nerve stimulation
https://www.hematologyadvisor.com/news/vagus-nerve-stimulation-hemophilia-control-bleeding-treatment/

Combined hematology-gynecology/adolescent medicine clinic addresses major gap in care
https://consultqd.clevelandclinic.org/heavy-menstrual-bleeding-in-young-patients-may-signal-a-bleeding-disorder

The call for earlier testing, equitable care and greater inclusion in research for women and girls
https://hemophilianewstoday.com/news/women-girls-face-gaps-hemophilia-diagnosis-treatment/

All the Bleeding Options brings these resources together into a single, organized platform. It serves as an access point for specialty pharmacies, treatment options, organizations, and more. https://www.allthebleedingoptions.com/

CHES on the Blood Stream Media Podcast
Listen to board members Barb Forss and Dr. Gary McClain on the Blood Stream podcast. They talk about emotional health, connection, and the importance of community. (Their portion starts around minute 18.)
https://www.bloodstreammedia.com/bloodstream-episodes/another-barb-amp-jeff-interview-with-gary-mclain

ISTH Women's Health Hub
The ISTH has launched its new Women's Health Hub, a comprehensive online resource designed to improve awareness, education and access to evidence-based information on bleeding and clotting disorders affecting women and girls. https://www.isthwomenshealth.org/

Treating Iron Deficiency Anemia
From our friends at Girls Bleed Too
https://www.girlsbleedtoo.org/articles/treating-iron-deficiency-in-women-with-hemophilia

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 Board Applications are open!
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