Bleeding Disorder News # 125: YouTube Uploads, New Orleans bound for InhibitCon and a new FDA approval for marstacimab!

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Bleeding? That's what we do!

Ladies and sons of ladies, This spring/end of the school year has felt busier than ever before. Between moving into the new role and having two teenagers, there are many days where I feel like I am just trying to be a good duck- calm above the water and frantically paddling to stay afloat under the surface. Now that I reread this, I have been using this analogy for years and I think I might retire the duck analogy. In this chapter, I'd like to be more of the Lead Gardener. My role is to TEND. Tend to the community, my family, my own needs. SHED LIGHT on the areas which aren't getting enough attention - which in the bleeding disorder community includes von willebrands, all ultra-rare disorders, women's participation in clinical trials, and the list goes on.... I am hoping the NOURISHMENT of the community and the CHES team means we are PLANTING SEEDS for what is possible. We still need to water and weed but one day soon, I think a beautiful garden could grow. May whatever you are tending and growing also have attention and water and light,  Heather CHES had not one but two webinars this week! If you missed them, please sit tight. Our webinar with Hemab and Girls Bleed Too covering a new investigational approach to VWD treatment will be up on YouTube channel shortly. The Hermanas de Sangre webinar was not recorded due to the nature of the topic but we are hosting another webinar on July 28, 2026 with Dr. Vanessa Salinas. Check out more information below. 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. The 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. 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 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) Mental Health and Physical Health I'm fine. https://hemophilianewstoday.com/columns/decades-gaslighting-behind-untruth-im-fine/ Study Updates This ASH article discusses bone mineral density biomarkers https://ashpublications.org/bloodadvances/article/doi/10.1182/bloodadvances.2026019657/568618/Bone-Mineral-Density-Bone-Remodeling-Biomarkers FDA Approval for marstacimab received for routine prophy ages 6+ for hemophilia A and B with and without inhibitors https://www.contemporarypediatrics.com/view/fda-expands-marstacimab-approval-to-children-ages-6-11-and-hemophilia-patients-with-inhibitors Women Women with hemophilia develop inhibitors too https://hemophilianewstoday.com/columns/women-hemophilia-develop-inhibitors-too/ Business News Star Therapeutics update https://www.reuters.com/legal/transactional/incyte-strikes-up-2-billion-deal-star-therapeutics-subsidiary-2026-06-08/   Check out our Library of resources for women with bleeding disorders!   Supported by an educational grant from Takeda Pharmaceuticals America, Inc 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. Click Here to Donate Older Posts Recent Back to News Back to Top Clinical Trials Find clinical trials in your area. CHES is not responsible for claims, info, or advice given on this site. Notifications Sign up for your favorite events. Receive periodic info on programs including dates, locations, and open registration. Or update your preferences if you've already signed up for notifications. CHES Foundation, Inc. nSpiration Through Education 16049 Chapel Park Ct., Noblesville IN 46060 Ph: 781.878.8561 Privacy Policy No results found