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What the World Cup games and Bleeding Disorders have in common
My family and I have been watching a lot of soccer these days. Hopefully you are as well as there are many lessons and a lot of inspiration to be found in the games.
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The clearest examples are showing up for each other, making it farther than we thought possible, rallying around a team model, peer support, and the demonstration of what happens when everyone has a role.
Less visible examples include playing through difficult circumstances (for soccer this means intense heat or rain), playing while injured, and playing after extreme hardship such as the loss of a parent or a child. The World Cup reminds us that we work better as a team. We support each other and we show up. We bring and/or expand our Glue Crew; in the case of the World Cup, that means coaches and trainers and physios. In the case of the Bleeding Disorders community that means caregivers and friends who show up at the drop of a hat and Healthcare Providers and perhaps a gathering of friends who become family.
The games unite people of different backgrounds. For the World Cup, it's the Scottish takeover or the way that people from different cultures are sharing their music, their food, their languages. In the bleeding disorders community, this means people with a different diagnosis coming together, to support and learn and connect.
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It's possible I am stretching this metaphor too far. That you are reading this and saying to yourself, this is a bit of a stretch, Heather, c'mon. But I stand by it. Shows of unity and support and tenacity ARE the bleeding disorders community to me.
Watch soccer. Be kind. Go Spain.
Heather
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InhibitCon, Leverage, and Inhibitor Family Camp applications are open!
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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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
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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 News
CHES needs your help! 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).
Board members are expected to be timely and present at every meeting. Between work within and outside of meetings, hours of commitment would typically vary between 3-5 hours per month. Board members are also encouraged to participate in fundraising and development activities. Board members are expected to commit to the role for a minimum of 1-3 years. Interested in making this commitment to CHES Foundation?
Sitting on a nonprofit board is a fantastic way to invest in the mission, help with the strategic direction of the organization, and build upon the wonderful foundation that CHES has created. CHES is a well respected national organization in the bleeding disorder space, serving the underserved of the underserved. CHES stands strong in our 3 pillars and looks forward to building a strong network of Directors to bring us into 2027 and beyond. If you have questions about the board opportunity, please contact Janet Brewer, Director Emerita, directly at jbrewer@ches.education.
Iron Screenings
Recommendations for routine iron screenings
https://www.prnewswire.com/news-releases/first-ever-recommendations-call-for-routine-iron-screening-in-people-with-bleeding-disorders-302808724.html
Alternate Funding Programs
https://www.pharmacypracticenews.com/Operations-and-Management/Article/06-26/Oncology-Access-Crisis-Plague-on-Patient-Assistance/80831?utm_source=social&utm_campaign=062026_Oncology-Access-Crisis-Plague-on-Patient-Assistance&utm_medium=share
Glanzmann's Thrombasthenia
GT data to be presented at ISTH (happening now in Paris!)
https://firstwordpharma.com/story/7652140
Genetic Counselors
Prevelance of Genetic Counselors at HTCs
https://hemophilianewstoday.com/news/many-us-hemophilia-treatment-centers-lack-genetic-counselors/
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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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