Bleeding Disorder News # 116: A vWD Special! Phase 3 anti-bleeding antibody VGA039 from Star Therapeutics

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Bleeding? That's what we do!

We value the strength, resiliency, connections, and fun you bring to CHES events. We look forward to seeing many of you at our upcoming experiences! See 2026 dates below for more info! It's only January and I've already bailed on one of my New Year's Intentions. I set a goal to walk one mile every day. And silly me, I wasn't realistic in my consideration that I live in Northern New England where the weather is often dark, chilly, and icy for much of the winter. My self-talk around this was bleak. Not meeting the goal this soon into the year is a disappointment. Then I heard the voice of someone I know say the best way to combat negative self talk is to talk to yourself in your Roller Derby Name. (She heard this suggestion on a podcast I have never listened to but I like this idea.) When you talk to yourself in your Roller Derby name, you tend to be more forgiving and kind and gentle. These are all admirable qualities that deserve a spot on my New Year's Intentions list. Which is how my negative self talk about missing an intention turned into a new intention.  Be kind, Heather SAVE THE DATES! - CHES 2026 IN PERSON EVENTS! CHES is the only national non-profit in the bleeding disorder space whose mission continuously offers meaningful, instructive, and consistent education for women and the ultra-rare and inhibitor communities. We are thrilled to announce our 2026 dates!   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 linked to this regular Digital Digest as they open. One Drop: Tampa, FL- February 27-March 1, 2026 (postponed from November 2025) LadyBugs National Women's Conference: Colonial Williamsburg, VA- April 24-26, 2026 in partnership with the Virginia Bleeding Disorders Foundation (formerly Virginia Hemophilia Foundation) After the Shock Inhibitor Family Camp: Camp Zeke, June 19-22, 2026 InhibitCon: New Orleans, LA, September 10-13, 2026 *First day is Leverage in partnership with GutMonkey OneDrop 2026: Tampa, FL, November 6-8, 2026   This edition of the Digital Digest is all about von Willebrands. Our three pillars remain- the inhibitor community, ultra-rares, and women- AND we also believe that all bleeding disorders deserve awareness and recognition. As we know from our annual LadyBugs retreat, there are many, many cases of undiagnosed vWD and the bleeding symptoms do not always correlate to the severity (as is true in many non-vWD folks too.) As an educational, patient facing organization, we will always seek to educate, advocate, and support the entire CHES community. This article recognizes Erik von Willebrand's important contributions to the community https://haematologica.org/article/view/13059 vWD classifications https://haematologica.org/article/view/haematol.2024.286058 vWD and Aging https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(25)00262-5/abstract vWD Pipeline updates https://www.barchart.com/story/news/35504516/von-willebrands-disease-pipeline-2025-pioneering-clinical-developments-by-4-global-leaders-delveinsight-highlighting-vega-therapeutics-hemab Expanded label for vonvendi  https://www.docwirenews.com/post/fda-expands-vonvendi-approval-to-adult-prophylaxis-and-pediatric-use-in-vwd Promising updates at ASH regarding Star Therapeutics clinical trial https://www.fiercebiotech.com/biotech/ash-star-antibody-sparkles-preview-potential-phase-3-bleeding-disease-success CHES News As always, CHES is grateful to our funders and community for the support! Please continue to spread the word about CHES. We welcome new individuals and families and remain true to our 3 pillars:   Inhibitor Community - Ultra-Rares  - Women   Camp Camp Camp I've said it before and I'll say it again- camp is a transformational experience! Whether your family/child attends CHES's Inhibitor Camp (it's awesome, check it out!) or a camp local to you, it's a once in a lifetime opportunity to build self-confidence and competence in managing the bleeding disorder. Many of my closest friends I met while directing NEHA's Family Camp. I truly cannot say enough about the benefits of camp.  The National Bleeding Disorder Foundation and BioMatrix Infusion Pharmacy both have a searchable directory of camps. BioMatrix's site includes CHES's Family Inhibitor Camp, After the Shock.  https://www.biomatrixsprx.com/bleeding-disorders/camp-directory https://www.bleeding.org/community-resources/resources-near-you/bleeding-disorders-camps   Hermanas de Sangre Campaign — CHES Foundation | Rare Bleeding Disorders Check out our Library of resources for women with bleeding disorders!   Supported by an educational grant from Takeda Pharmaceuticals America, Inc Did you know CHES is now a 501(c)3? Since 2015, nSpiration Foundation has collaborated with CHES to further its mission to serve those with bleeding disorders and other chronic conditions. Effective 01/01/2023 nSpiration and CHES have merged to remain a non-profit committed to serving the needs of the community. Want to aid CHES Foundation in future endeavors? 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-occuring contribution, even $5 would make a huge difference!  Click the button below and give today. Click Here to Donate Older PostBleeding Disorder News # 115: WE'RE BACK! With Glows and Grows for 2025 and 2026! 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 84 Beach Street, Middleboro MA 02346 Ph: 781.878.8561