From Heather Case, Director of Advocacy and Outreach
It's nearly the end of May which is hard to believe and yet true! There are so many things happening this time of year- graduations, transitions, new wardrobes- the list is nearly endless. Amidst all that is happening, I hope everyone is taking a moment to be present. It is a chaotic time. Be sure you are staying centered and rested and reach out if you need any support. Together we will overcome!
On May 14th, HHS Secretary Kennedy testified in front on Congress about his proposed cuts and overhaul of the HHS. Secretary Kennedy defended his choices. You can read more about this eventful testimony here.
The call to action for the community remains clear: educate yourself on the facts and consider speaking up to protect key assets including the safety of the blood supply, blood surveillance, and inhibitor testing. You can use this link to reach out to your representative and this link to find suggested language.
As noted in our previous edition, national organizations including CHES sent a letter to HHS Secretary Robert Kennedy to request a meeting. We will keep you updated as we hear more. CHES continues to work closely with other national thought leaders to connect with congressional champions to present one united voice. CHES wrote Letters to the Editor to multiple news outlets in New England and beyond. As our publication date, our letter was published in the MetroNews West Daily and the Boston Herald.
This edition's video features kinesiotaping. As the weather gets nicer and people are more active, it's always good to keep yourself prepared. To see the video click here. There is 24/7 access to all of CHES's webinars by clicking the YouTube icon at the footer of the CHES website.
Let's stay engaged, active, and vocal.
You are not alone!
Heather Case
Director of Advocacy and Outreach
ATS Inhibitor Camp Registration CLOSES NEXT FRIDAY! We are looking for more families to come!
After the Shock Family Inhibitor Camp - Applications are Open!
CHES is the only national non-profit in the bleeding disorder space whose mission continuously offers meaningful, instructive and engaging education for the inhibitor community.
Impact of cuts to research and funding
This article describes further anticipated the impact of funding cuts.
https://www.hematologyadvisor.com/features/trump-cdc-cuts-blood-disorders/
Women and Bleeding Disorders
This article in mainstream media (!!!) talks about the causes of Heavy Menstrual Bleeding.
https://www.self.com/story/causes-of-heavy-bleeding-during-period
Mental Health
This article discusses the importance of Mental Health in the community.
https://hemophilianewstoday.com/columns/improving-mental-well-being-hemophilia-community/
Caregiver burnout
https://hemophilianewstoday.com/columns/emotional-toll-caring-child-hemophilia/
Other topics
Unmet needs in hemophilia
https://www.managedhealthcareexecutive.com/view/what-a-real-world-study-says-about-the-unmet-needs-of-people-with-hemophilia-a-and-b
An article about treatment with SerpinPC from Hematology Advisor.
https://www.hematologyadvisor.com/news/hemophilia-serpinpc-hemostasis-mouse-model-treatment-risk/
The importance of timing of a bleeding assessment
https://www.researchgate.net/publication/391568104_Timing_for_Assessment_of_Bleeding_Diathesis_in_Pediatric_Blunt_Traumatic_Brain_Injury
The cost of prophy
https://www.hematologyadvisor.com/news/efanesoctocog-alfa-not-cost-effective-for-prophylaxis-in-hemophilia-a/
Ultra-Rare Bleeding Disorders
Fast Five Quiz for ITP
https://reference.medscape.com/viewarticle/1002419_4?form=fpf
By Females for Females BFFF
By Females for Females, BFFF, calls are open to any female or those who identify as a female who are 19 years+. We welcome the experience, knowledge and shared space that this group is fostering from females of all ages! To sign up for BFFF news and events, use this link.
Visite la página de Hermanas de Sangre para obtener más información sobre nuestra iniciativa para promover la autodefensa de aquellos que hablan español
Hermanas de Sangre Campaign — CHES Foundation | Rare Bleeding Disorders
CHES Events 2025 SAVE THE DATE!
InhibitCon East: April 4-6, Charlotte, NC - IN THE BOOKS
After the Shock (Family Inhibitor Camp): June 20-23, Lakewood, PA (OPEN)
LadyBugs: August 8-10, Salt Lake City, UT (Opens in Early June)
InhibitCon West: October 3-5, Portland, OR
OneDrop (Ultra-Rare Consortium): November 14-16, Tampa, FL
Applications for 2025 CHES Events open approximately 8 weeks ahead of event date. If you are interested in learning more about CHES's critical in person community educational events in 2025, please visit the CHES Website. Planning for our 2025 events is well underway and we are excited to share education, connections and community with you!
Check out our Library of resources for women with bleeding disorders!
Supported by an educational grant from Takeda Pharmaceuticals America, Inc