CHES Foundation, Inc.

07/26/2025

InhibitCon West registration goes live August 4th at 12pm EST! We've been so excited and grateful that we can provide not one but TWO Inhibitor Conferences on each coast this year. AND we get to partner with GutMonkey in their home arena of Portland, OR.

What is even more thrilling is that Leverage returns with a pre-event a day early before the full conference. Use the link below to learn more about the weekend!

https://ches.education/inhibitcon

07/23/2025

Join Hemophilia Federation of America on August 6th, 2025 from 6-7pm EST for a deeper dive into what this means for the community and the impacts that will be felt across this country. Visit their page below to sign for the meeting. We thank HFA for making this happen as there are many who absolutely need this information.

https://www.hemophiliafed.org/events/bleeding-disorders-national-community-organizing-call/

What will be covered:
Will I still qualify for the coverage I have now?
What changes are coming to Medicaid, the Marketplace, and employer plans?
Are there new work requirements or reporting rules?
When do changes go into effect?
What can I do about it?

07/18/2025

Our Digital Digest this week covers more federal funding cuts and how they impact things like Medicaid, even higher costs of pharmaceuticals and the effect on 340B Programs. We also cover Dysfinobrinogenemia how it relates to pregnancy and as we enter hurricane season, emergency preparedness. ⛈️ As we have seen the devastating floods in North Carolina(again!) and Texas that had little to no warning for many of whom were most impacted.

Read more news on our blog here: https://ches.education/news

Greetings, This intro is a little different than my previous community letters. Honestly, I tried hard to reserve my musings for other audiences but I am upset and need your support. The CHES team has been working diligently behind the scenes to create our annual women's event, Lad

07/04/2025

🐞 Invites to attend LadyBugs 2025 in Salt Lake City with have gone out! Check your emails and spam/junk folders! We had an OVERWHELMING number of applications. It is a new CHES record too! Over 150 women applied and we could only take about a third 😢 This truly does demonstrate the need for more funding across the board for National Meetings for Women with Bleeding Disorders and those who identify as such. Happy 4th to everyone and we'll see you in Utah!

07/04/2025

We wish everyone a happy, safe and fun 4th of July for EVERYONE celebrating their independence. We will dive into the travesty that is the Big Terrible Bill in the coming weeks. But for now, our Digital Digest this week covers the Medical Gaslighting of Women, ISTH Updates and continued advocacy. Especially important during these very troubling times.

Happy 4th of July, y'all! CHES hosted our 15th annual After the Shock, Inhibitor Family Camp in PA at the end of June. We welcomed 10 inhibitor families from across the country. If you aren't familiar with After the Shock, check it out here and consider joining us next year. A HUGE

07/01/2025

🚨ALERT - Photo Dump of Inhibitor Family Camp!

Self-Infusion is always a BIG priority at camp. Which is why we have BIG Sticks to match it! Self-Infusion is a crucial skill for everyone to learn in this community but it is also an important doorway to independence for individuals and families. Check out more of our favorite photos taken at camp this year!

07/01/2025

UPDATED POST: The Senate has voted to move the Big Terrible Bill forward by cutting healthcare and food assistance for those most impacted by disabilities and the hungry at the expense of giving the wealthy even more tax cuts. Not to mention raising the national debt limited by another $4 Trillion Dollars.

What does this mean for our community?
🚨 1 in 3 affected by a bleeding disorder will lose healthcare coverage if their primary insurance is funded by Medicaid. This also includes marketplace plans that receive partial or full support of Medicaid reimbursement.
🚨 Rural and Deficit States will be the most impacted which contain a large amount of non urban and rural hospital and health care systems.
🚨 What is a Deficit State? A Deficit State receives more financial support from the federal government than it produces in the form of taxes being returned back to the government. Here is a map of these states from 2009. Albeit a bit outdated, but the demographic spread has not changedl: http://bit.ly/40zokOd

With the exception of three Republicans who voted no, the bill passed by 51 votes. These Senators are all from states/area that would be impacted the most. We encourage not just to call them but to primary them out in the 2026 elections. Our energy now must be to call your House Representatives NOW!

We have no words for how awful this administration is as it continues to rip the rug out from under those who need the most support. The full effects of the bill happen in 2028 and 2032 in which the GOP will use the fallout to blame Democrats. Sound familiar? Because it happened in 2016 which contributed to Trumps first term. Our last line will be the House and that feels bleak 😢 But there is some hope as many House Representatives "Didn't even know what they were voting for the first time." As they didn't "Read the full bill."

The Republican megabill cuts trillions in taxes, while scaling back spending on Medicaid and other federal programs. It now heads to the House, where some GOP lawmakers are signaling major objections.

06/30/2025

The camp withdrawal is real and it's only been a week! We're incredibly grateful to Novo Nordisk to be able top serve 60+ individuals affected by an inhibitor at ATS. Your commitment to our community and our families is truly inspiring. 💙

06/26/2025

Even the small moments of sitting down to draw or write are invaluable when it comes to slowing down and relaxing at camp. Our Inhibitor Family Camp concluded on Monday this week and sending families home is the hardest thing of the whole weekend. But we know that everyone came away with more friends, more resources and more memories. Probably a sunburn as well 😎

We thank Novo Nordisk for being our Platinum Legacy Sponsor for making camp happen not just this year but for all of the camps they have supported for us in the past! Without them, Inhibitor Families would not have a camp to call their own.

06/25/2025

We missed posting our Friday Digital Digest because we were all at camp! 🏕️ It was a huge (hot 🥵) success and the memories made are priceless. Last weeks edition covers advocacy resources that are already out there, how cuts to rural hospitals will impact care and why mixing vitamins may not always be the best idea for bleeders like us!

Read more Digital Digest posts on our News Blog at: https://ches.education/news

This edition of the Digital Digest is coming out while the CHES team is hosting our 15th annual After the Shock, Inhibitor Family Camp in PA. Which means while you are reading this I am likely slapping away mosquitos and putting on another layer of sunscreen. We are very excited to

06/22/2025

Inhibitor Family Camp is still in full swing ! Without the support of our gold sponsors these families would not be able to experience the many amazing activities that you can only do at camp. Tie Dye is being made, arts 🎨 are crafted, arrows shot 🏹, water balloons 🎈launched, fish 🎣 are being caught, boats 🛶 are paddled. And that's not even half of it!

Learn more about After the Shock if you are interested in having your family attend next year here:
https://ches.education/after-the-shock

Gold🏅Sponsors: , Genentech, and Sanofi