Bleeding Disorder News # 114: Check Up from the Neck Up! Mental Health at this time of year? In this economy?

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Bleeding? That's what we do!

Happy Holidays!   Recent Digital Digest letters have focused on Mental Health and this one is no different.    As my close friends know, I regularly send texts to my near and dear with the line "Check up from the neck up." I can't claim the phrase as my own - I borrowed it from my good friend Lee Hall - but I do find it's a useful way to touch base and check up on the headspace of those around me. Especially during the holidays which can bring up a lot of stuff about a variety of topics from Keeping Up with the Joneses to grief and loss. In my experience it has opened the door to some powerful conversations and brings mindful attention to how we hold each other up. Along the lines of taking care, The CHES team is taking a breather! Our office will be closed starting Monday, December 22 and returning on Monday, January 5th. Janet, Eric, Chris, Joan and I are all planning to unplug, rest and restore. We are VERY EXCITED for our 2026 events and look forward to returning energized and engaged! May you have a wonderful holiday season, 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 Hemophilia Foundation After the Shock Inhibitor Family Camp: Camp Zeke, June 19-21, 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   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   Save the Date Postcards will be arriving in mailboxes in January 2026. Have you moved? Changed your contact information? Please update here. Giving Tuesday was celebrated on December 2nd but it's not too late to act! Giving Tuesday is recognized globally as a day that encourages people to do good. Every act of generosity counts! If you cannot afford to DONATE to CHES, consider checking on an elderly neighbor, sending a thank you note to your hematology team, dropping off cookies at your local fire department. Women Anticoagulation from menstruation to menopause https://www.jthjournal.org/article/S1538-7836(25)00847-5/abstract Reproductive health and FVII deficiency https://www.jthjournal.org/article/S1538-7836(22)18361-3/fulltext Pharmacy Benefit Manager OP-ED  A must read by Rich Pezzillo, Executive Director of the New England Hemophilia Association (NEHA) https://www.nhbr.com/pharmacy-benefit-manager-reform-is-the-bipartisan-solution-patients-desperately-need/?fbclid=IwY2xjawOlFXdleHRuA2FlbQIxMABicmlkETFoM1JoTUZ6dm9KYXU1bTN0c3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHjy0gZLEd56DOZMBywnaRbliVoZRNH3kk5TPomBYd_jy8T2DB9UGbMI9fQN3_aem_5jdyTYSHzMYzwfLxrJKU0w Treatment Updates From ASH: an update on Pfizer's bypassing agent https://www.fiercepharma.com/pharma/ash-pfizer-aiming-level-hemophilia-playing-field-trots-out-hympavzi-inhibitors-data From ASH: an update on Star Therapeutic's VWD treatment in trial https://www.fiercebiotech.com/biotech/ash-star-antibody-sparkles-preview-potential-phase-3-bleeding-disease-success From Hemab, an update on their Glanzmann's Thrombasthenia trial https://www.prnewswire.com/news-releases/hemab-therapeutics-announces-positive-complete-phase-2-data-for-sutacimig-in-glanzmann-thrombasthenia-at-ash-2025-plans-to-advance-to-pivotal-phase-3-study-302634302.html From BioMarin, an update on their gene therapy  https://www.bleeding.org/news/biomarin-announces-roctavian-out-licensing-plans-for-hemophilia-a-therapy?utm_medium=email&utm_source=mailchimp.com&utm_campaign=NBDF%20News&utm_term=Communications&utm_content=25-11%20-%20BioMarin%20Announces%20Out-licensing%20Plan%20for%20ROCTAVIAN Camp Camp Camp 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. The National Bleeding Disorder Foundation, NBDF, has a searchable directory of camps. Many of my closest friends I met while directing NEHA's Family Camp. I truly cannot say enough about the benefits of camp. Check it out! https://www.bleeding.org/community-resources/resources-near-you/bleeding-disorders-camps   Hermanas de Sangre Campaign — CHES Foundation | Rare Bleeding Disorders That's a wrap on CHES Events 2025! THANK YOU to each person who attended, supported, volunteered, spoke, and shared their experience and humor with the CHES community! 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 # 113: Glue Crew, Giving Tuesday and Save the Dates for 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