Hemophilia B Monthly
Empowering Through Education and Community
| |
From the CEO – A Summer Reset
As we move into the heart of summer, we’re reminded of a phrase many of us grew up hearing: the lazy, hazy days of summer. The truth is, for most of us, life doesn’t seem quite so lazy anymore. Our calendars are full, our inboxes never stop filling up, and our phones keep us connected every minute of the day.
Perhaps this summer is inviting us to do something different.
Perhaps it’s time for a Summer Reset.
A reset doesn’t have to be dramatic. It can begin with a few simple questions:
- What is truly necessary?
- How can I spend less time managing emails and more time creating memories?
- How can I be more present with the people I love?
- What brings me joy?
- When was the last time I put my phone down and simply enjoyed the moment?
Summer has a way of reminding us what matters. It encourages us to slow our pace, breathe a little deeper, and reconnect with the world around us. It invites us to gather with family and friends, take long walks, sit outside with a good book, enjoy a meal together, or simply watch a sunset.
It’s the season of bare feet in the grass, flip-flops by the door, fishing poles by the water, children laughing in the distance, and warm evenings spent under the stars. It’s a time to feel the sand between our toes, swim in cool water, listen to the sounds of nature, and remember that not every moment needs to be rushed.
This month, we invite you to embrace your own Summer Reset. Make room for what matters most. Be present. Create memories. Find joy in the simple things.
After all, summer isn’t asking us to do more.
It’s asking us to slow down. Enjoy the season, and savor the moments that make life meaningful. ☀️🌻🌊
With Gratitude,
Kim
| |
|
|
Be Biopharma has ended its Phase 1/2 BeCoMe-9 study of BE-101, an investigational cell therapy for hemophilia B. According to a federal clinical trials database and confirmed by the company, the trial was discontinued as a strategic business decision and was not linked to any safety concern. The study had enrolled five of an anticipated 24 patients before it was halted.
BE-101 was being developed by Cambridge, Massachusetts–based Be Biopharma. The therapy used a patient’s own cells, modified outside the body to produce clotting factor IX (FIX), with the potential to be re-dosed if needed. The company has no other listed trials for BE-101.
The decision was tied to business and market factors rather than to the safety of the treatment.
CHB will continue to follow developments across the hemophilia B research pipeline and keep the community informed as new information becomes available.
|
| | |
|
Women's Education & Empowerment Program | |
Sept 17-20, 2026; IN PERSON in Orlando, FL
All selected applicants will receive a travel scholarship that includes airfare or mileage, lodging, and meals provided as part of the official event agenda.
The Hemophilia B Women’s Education & Empowerment Program is a unique three-day experience, during which women are given a safe space to share their journey with others and gain support.
All women attending benefit from the connections and learn strategies for managing hemophilia B through all life stages. Attendees continue to stay on the cusp of innovation through the education and resources provided. They are empowered by the journey they take together, provide each other with support not only during the retreat but on an ongoing basis, and stand ready to deal with life’s challenges!
|
| | |
|
Men's Education & Empowerment Program | |
October 22-25; IN PERSON in Orlando, FL
All selected applicants will receive a travel scholarship that includes airfare or mileage, lodging, and meals provided as part of the official event agenda.
NEW! Built for Real-Life Schedules: Come in Thursday for an optional chill evening meetup, arrive Friday night, or roll in Saturday morning, whatever works best for your life and schedule. This experience was designed to meet you where you are, with meaningful conversations, interactive sessions, real connection, and time to recharge alongside other men who get it.
The Hemophilia B Men’s Education & Empowerment Program is more than a retreat, it’s a space to connect, laugh, learn, and talk openly with other guys navigating similar experiences in a supportive, judgment-free environment.
|
| | |
|
Meet Michelle! She has two sons who are the center of her world, and she speaks nationally as a champion of the bleeding disorders community! Read about Michelle's journey to a diagnosis and the impact it had on her life on page 27 of the newsletter! |
| | |
|
Fall Meetings on the Road | |
Meetings on the Road are educational, supportive, and free for all members who attend. Gas and toll expenses will be reimbursed, and meals will be provided.
Connect with your hemophilia B community! These events will take place all over the country, so find the one closest to you and come along.
This is a family-friendly event, so bring your loved ones and create new memories with your community. Whether you're new or a veteran, this gathering is for you.
Each meeting takes place on a Saturday and features a full day of exciting activities and interactive learning sessions. You'll have the chance to learn from distinguished speakers and share your experiences with other attendees on living with hemophilia B. We also have fun games and special experiences planned to keep us entertained and engaged.
Albuquerque, NM: September 12
Salt Lake City, UT: September 26
Portland, OR: October 10
Burbank, CA: November 7
|
| | |
|
|
In this practical and reassuring episode of Boundless B, Kai M Sorensen speaks with Dr. Douglas Hutchinson, a practicing dentist and father of a son with severe hemophilia B, about a topic many families quietly worry about: dental care. Together, they unpack why brushing, flossing, and dental visits can feel intimidating in the bleeding disorders community — and why avoiding them can create bigger problems down the road.
Dr. Hutchinson explains that bleeding gums often point to inflammation, not danger, and shares simple ways families can build safe, effective oral hygiene habits. He also offers guidance on how to talk with your dentist, when your hemophilia treatment center should be involved, and why prevention is one of the best tools families have.
|
| | |
|
Gene Therapy Support Network | |
For men with hemophilia B over 18.
Hosted by Bobby Wiseman
If you are a male with hemophilia B who is currently on gene therapy or thinking about gene therapy, we invite you to join our private group discussion.
You will hear directly from a member of our hemophilia B community who has experience with gene therapy. He will share his story and answer your questions in a safe, supportive setting.
Dinner vouchers will be provided.
Upcoming Dates
- July 7
- August 4
- September 8
Sign up and let us know you’re coming.
|
| | | |
Introducing Living B: The Men’s Collective, a Virtual space built for men living with hemophilia B and dads raising the next generation.
Whether you’re managing your own journey or showing up for your kid, this is where you can talk straight, learn what matters, and connect with guys who understand the day-to-day.
Because doing this alone isn’t how it’s meant to be.
Join us on June 30th at 8PM EST
| |  | |
This is a Virtual community circle created for women living with hemophilia and those still on the journey to diagnosis.
Whether you've received a diagnosis or are still advocating for one, we are here to provide resources, offer support, and build a sisterhood rooted in strength, truth, and shared experiences. Because your voice matters. Your story matters. And you're not alone.
Join us on July 10th at 8pm EST
| | | Julio 13: Esta serie Virtual está diseñada para la comunidad latina de hemofilia B, proporcionando un espacio dedicado a conectar, aprender y discutir temas clave que más te importan. Cada sesión contará con conversaciones con expertos médicos, defensores de pacientes y familias afectadas por la hemofilia B, que ofrecerán valiosos puntos de vista y experiencias de primera mano | | | |
August 6: Introducing The Caregiver Thread, a Virtual event. A space for caregivers across generations.
Whether you’re a parent, partner, or family member, this is a place to connect, share, and feel supported by others who truly understand.
We are stitched together by love, endurance, and compassion.
| | |
|
Hear Directly From Someone Who Has Received Gene Therapy and Learn More! | |
July 23: Come hear from an expert physician on gene therapy for hemophilia B and listen to a firsthand account from someone who has received the treatment. This is your chance to learn and ask any questions you may have!
Speakers: Andrea Buxton, MSN, APNP, FNP-C (HCP Speaker) & Chip (Advocate Speaker)
|
| | |
| The Coalition’s Annual Symposium brings together a distinguished faculty, including medical, research, mental health, and policy experts, alongside industry leaders and advocates. It provides attendees with education, mutual support, and a unique opportunity to connect with others on their path toward greater independence and success. Our event fosters a deeper sense of community and empowers individuals as they move forward in their careers and lives. | | | |
|
Legislative Word of the Month
Scoring
| The official estimate of how much a bill will cost or save, usually done by the Congressional Budget Office (CBO). |
| | |
|
Thomas Edward Allie
Aug 11, 1952 — May 31, 2026
We are saddened to share the passing of Tom, a longtime friend and steadfast advocate for the community. Known for his compassion, generosity, and willingness to help others, Tom made a lasting difference in the lives of many. He will be remembered with gratitude and greatly missed.
| | |
Matthew Compton
Feb 16, 1971 – June 13, 2026
The Coalition for Hemophilia B mourns the loss of Matthew Compton, a beloved member of the bleeding disorders community. Matthew's kindness, friendship, and dedication touched countless lives, and his impact will be felt for years to come. We extend our heartfelt condolences to his family and loved ones.
|
| | | | | |
