CHES Community Newsletter!🩸💜👑

Hi All,

Early in my professional career, my boss, Nora, gave me feedback that has stayed with me ever since. She observed that I often made insightful comments after a meeting or discussion but did not often talk during a meeting. She encouraged me to talk more.

Nora encouraged me to think about Presence and Voice. I have used Presence and Voice as a mantra ever since. In many settings, the advice is clear. Speak up for what you believe in. In personal settings, such as talking with a friend who is going through a hard time, I try to stay more focused on the Presence piece. It's not what you say so much as how you show up.

I'm sharing this rambling with you now for 2 reasons.
1) CHES needs your voice. As we seek funding for our 2027 education, your voice matters. Talk to your local representatives of your speciality pharmacy and manufacturer about the impact of CHES on your quality of life, identification of your glue crew, and daily support. Share CHES events and information at your HTC visits. All boats rise with the tides. Join us.
2) Remember Presence and Voice on the days you would rather just go back to bed/read a book/hibernate. The world needs you. CHES needs you. Your family needs you. Even if you aren't feeling 100% yourself- show up. Showing up is half the battle.
If you are looking for other ways to implement the Presence and Voice mantra. Stay tuned. We are just getting started!
Best,
Heather

One Drop 2026 in Tampa is fast approaching! Are you affected by an ultra-rare bleeding disorder? This conference is for you! A list of Ultra-Rare conditions can be found at https://ches.education/one-drop

CHES remains dedicated to offering high quality education and connections with ultra-rares, women and the Inhibitor Community.

CHES Board Applications are open!
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). Interested in making this commitment to CHES Foundation? If you have questions about the board opportunity, please contact Janet Brewer, Director Emerita, directly at jbrewer@ches.education.
Applications are open and available here

CHES is seeking Administrative Assistance
Do you have approximately 10 hours per week to commit to assisting CHES with administrative/bookkeeping support? Work would be done at home. Interested participants would require an accounting or bookkeeping background; including familiarity with QuickBooks Online. If interested, please reach out with a resume and cover letter to info@ches.education.

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.

Glanzmann Thrombasthenia Study
CHES recently connected with two powerhouse women based in the UK who have built a company dedicated to ultra-rares and the GT community. They are conducting a study to better understand Quality of Life and current impact of GT on patients across the world. Please consider participating in their important study- your voice matters!
Glanzmann Thrombasthenia Real-World Insights Study

NBDF Advocacy Helps Secure New ICD-10-CM Code for Glanzmann Thrombasthenia
Advocacy efforts led by the National Bleeding Disorders Foundation (NBDF), in collaboration with the Glanzmann's Research Foundation and the CHES Foundation, have resulted in a dedicated ICD-10-CM code for Glanzmann thrombasthenia, a rare inherited platelet disorder. The new code, D69.11, will help clinicians, researchers, insurance companies, and public health systems identify Glanzmann thrombasthenia more accurately and better understand the needs of people living with the disorder.
More about the release here

By Females for Females: Iron Deficiency Anemia and Your Diet.
Are you a female aged 19+ with a diagnosed bleeding disorder or seeking diagnosis? If so, please join us for the next BFFF (By Females for Females) webinar on Tuesday, 10/20! The session will focus on Iron Deficiency Anemia and bleeding disorders and led by Liz Richard, MS RDN LDN CNSC. The webinar will take place on Tuesday, 10/20 at 8PM ET. Sign up to receive BFFF notices here.

ISTH Women's Health Hub
The ISTH has launched its new Women's Health Hub, a comprehensive online resource designed to improve awareness, education and access to evidence-based information on bleeding and clotting disorders affecting women and girls. https://www.isthwomenshealth.org/

Testing for Teens with Heavy Periods
https://hemophilianewstoday.com/news/tests-bleeding-disorders-urged-teens-heavy-periods/