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Happy New Year! It's hard to believe it is 2026. CHES had a rich and rewarding 2025 and we anticipate 2026 to be even more so. More community, more education, more events, more connection!
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As I start to set 2026 goals, I can't help but reflect on 2025 highlights, or as I call them, "glows" from 2025. So here it goes, Heather's Top 2025 Glows:
- LadyBugs Retreat in Salt Lake City was an incredible event. We dearly missed our fearless leader, Janet Brewer, and were fortunate to partner with the Utah Hemophilia Foundation and their dynamic leader, Jan Western, to host a very special and educational event for over 50 females. We are very much looking forward to welcoming a new crew of LadyBugs in 2026 when we host with Heather Conner and the Virginia Hemophilia Foundation in late April. Discovering that a group of ladybugs is called a Loveliness felt very apt!
-After the Shock- It's hard to put into words the impact of family inhibitor camp. These few days in the Poconos really demonstrated to me the uniqueness of the CHES family. We doubled down on how we show up for each other, provided support and connection, and created a safe space for education and community for everyone, caregivers, patients, and siblings alike.
- Two InhibitCons on separate coasts was a big lift for our small and mighty team but we pulled it off with lots of help (and coffee!) It was fascinating to see how the events, while similar in structure, had unique content and dynamics. I went to Oregon for my undergrad and was especially excited to return to the Pacific Northwest (go, Ducks!) It goes without saying that our Glue Crew- in particular our rockstar nurses, Brianna and Kathy- were instrumental to our success! Partnering with Gut Monkey is always sure to be a phenomenal experience.
- And finally, in my shmoopy way that you have come to know, I want to highlight the rest of the CHES staff. Even though it is my name on these opening letters, I am grateful to work with 4 incredibly dedicated, generous, and wonderful humans. Janet, Eric, Chris and Joan work tirelessly to build and connect the CHES community. Their commitment is a shining example of what you can do with intelligence, passion, and a fervent commitment to showing up.
We hope to see you each at our 2026 events!
Be kind,
Heather
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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 19-22, 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
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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
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.
Healthcare in the Marketplace
This nifty calculator from KFF lets you see affordability.
https://www.kff.org/interactive/subsidy-calculator/
Recursos en español
https://www.kff.org/es/faqs/preguntas-frecuentes-mercado-de-seguros-de-salud-y-aca/
Women
Showing up for each other!
https://hemophilianewstoday.com/columns/women-bleeding-disorders-show-up-each-other/
Clinical Trial Update
In December, a patient died of a thrombotic stroke on a Pfizer clinical trial. This serious adverse event is explained further in the statements below:
WHF/NBDF statement: https://wfh.org/article/wfh-and-nbdf-statement-on-severe-adverse-event-with-marstacimab-rebalancing-agent-for-hemophilia/
Pfizer press release: https://wfh.org/wp-content/uploads/2025/12/Letter_Marstacimab-Serious-Adverse-Event_12.22.2025.pdf
Overview in this article: https://firstwordpharma.com/story/6893911
Weight loss and Bleeding Disorders
The impact of losing extra weight for one female with a bleeding disorder.
https://hemophilianewstoday.com/columns/secret-losing-over-100-pounds-start-coffee-order/
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. 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
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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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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.
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