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Hi All,
As the CHES staff plans to meet individuals and family members impacted by an inhibitor in New Orleans in a little over one month, we are looking closely at creating intention with every aspect of the experience and reviewing our risk management approach. A risk management approach means reviewing everything from the layout and set up at sessions to accommodate any mobility devices, to scouring the menu selections to honor allergy needs, to being diligent that the agenda offers safe space and processing time. I often compare running large events to producing a theatre production. We need many systems working together as one in order to host a successful event.
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Does everyone know their role (knows their lines for the play)? We have our supplies (props are set)? AV is set up (we can hear the actors)?
As a community member attending, the experience should be immersive, educational and supportive. Any snafus that happen stay behind the scenes (or the curtain to extend the play analogy.)
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The risk management approach for events is also useful in the non-event space. Does your family have an emergency plan in place? Travel letters? How to respond in case the unforeseen happens?
As any camp pro knows, camp often runs on Plan A until something unexpected occurs. Then camp needs a Plan B, Plan C, Plan D. This is true for families too. A late summer review of key areas may be useful.
CHES will be doing several ahead of InhibitCon and then several after. You know, to make sure everyone knows their lines and where the props are!
You can trust that CHES is acting with intention, integrity, and emotional safety at the forefront.
Best,
Heather
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InhibitCon, Leverage, and Inhibitor Family Camp applications are open until August 21. 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!
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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.
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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
OneDrop 2026: Tampa, FL, November 13-15, 2026
(for individuals with ultra-rare bleeding disorders)
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CHES at NBDF's BDC
CHES has a presentation at BDC on the importance of data in the Ultra-rare community. The presentation is in the ultra-rare track. Dr. Tami Singleton and Skye Peltier, PA-C, are presenting on Friday, August 14th, at 1:30 PM. If you are attending BDC, please consider attending or swinging by to say hi to Eric and me.
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.
Return of Stimate
https://www.bleeding.org/news/ferring-pharmaceuticals-announces-return-of-stimate?utm_medium=social&utm_source=facebook.com&utm_campaign=NBDF%20News&utm_term=Communications&utm_content=Return%20of%20STIMATE&fbclid=IwY2xjawTdiZlwZG9mAWV4dG4DYWVtAjEwAGJyaWQRMXFMc253S3hHZHB2V1VJN2hzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEe3yZEwl52-v8G8fc-A4k9vIXv4csrLCX2rSYCc9k4Zc3qJNzs5cXkpFcng-4_aem_HCL7-qt6TlYXYyd63x4SQA
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.
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Check out our Library of resources for women with bleeding disorders!
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Supported by an educational grant from
Takeda Pharmaceuticals America, Inc
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CHES is now a 501(c)3.
Since January 2023, nSpiration Foundation and CHES have merged to remain a non-profit committed to serving the needs of the community.
Support CHES Foundation to maintain its critical programs by donating. With your help, we can:
- Sustain and grow our unique events
- Continue educational programs and informative communications
- Tailor resources specifically for the bleeding disorders community
  
Consider making a monthly re-occurring contribution, even $5 would make a huge difference!
Click the button below and give today.
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