BY GLENN MONES

From October 29-31, a group of men from throughout the community came together over Zoom for the Coalition for Hemophilia B’s Fall 2021 Men’s’ Education & Empowerment Retreat. This program has become a treasured part of CHB’s annual calendar as it provides men in the community with a unique opportunity for education, powerful tools and to share feelings and experiences creating a strong connection with each other on a deep level. Although the event had to be held virtually because of the ongoing pandemic, CHB was able to offer engaging, interactive activities that, based on participant feedback, successfully replicated much of the warmth and camaraderie that continues to make this program a draw.

The program opened Friday evening with welcoming remarks by CHB President Wayne Cook followed by rap sessions and icebreakers led by Wayne, fellow community members Carl Weixler, Fel Echandi and Rocky Williams. Also participating was psychotherapist and author Robert Friedman, MA who led the next session entitled “Being the Best You Can Be – Staying Motivated.” Robert is a popular presenter at many CHB programs who uses humor, and other modalities to learn about each other and themselves. Robert’s session showed participants how to maintain a positive attitude when working to overcome life’s challenges.

The men closed the first night by joining in their choice of fun, interactive games that were all a big hit. Some of the games helped encourage teamwork and promoted cohesiveness in the group. Others, were just a fun way for participants to relax and hang out together.

Saturday morning started with the “feeding” of mind, body and soul”. Community member and Rick Starks led participants in a session of tai chi and meditation designed to promote physical fitness and a sense of calm and mental well-being. Tai chi has been described as meditation in motion, tai chi promotes relaxation and stress reduction through gentle, flowing movements. As you move you find yourself breathing deeply and more naturally. Tai chi also addressed other key components of fitness including: muscle strengthening, flexibility, and balance

Well known, Chef Mike Hargett led the attendees in preparing – and then enjoying – their own unique breakfast sandwiches. As an accomplished chef and the only person with hemophilia to have received a double organ transplant, Mike’s positive attitude towards his own life and health has inspired many in the community to make their own life changes.

The afternoon opened with a session on using the techniques offered by cognitive behavioral therapy (CBT) to effectively deal with emotional situations. The powerful discussion was led by Dr. Joel Minden, a licensed clinical psychologist and author of the book Show Your Anxiety Who’s Boss. The session went overtime as the participants became very engaged and had many questions.

After a short break, the men divided into two groups for breakout sessions. The first, geared towards men with hemophilia B, was led by Mike Sager of Pfizer. Mike covered a range of topics including communicating with your health care team, financial considerations of health care through life stages, and the importance of staying physically active. The other breakout was targeted to the fathers and spouses of individuals with hemophilia B. It was led by Joseph Schuch who is also part of the Pfizer team. Joe is dedicated to empowering families through sharing knowledge and support.

Later in the afternoon, the attendees engaged in a session  of Art therapy, which has been proven to improve communication, concentration, and can help reduce feelings of isolation. This session was specifically sketching with pencils to explore one’s creativity and manifest positive change in every area of life. Participants had a chance to create and share their own small works of art. The session was conducted by Jessica Carlisle LPC, LTR,a Licensed Professional Counselor and Art Therapist at the Dandelion Therapeutic Art Center. This was followed by two more targeted breakout sessions. The first, led by attorney and popular CHB speaker Donnie Akers, Esq., was geared towards dads and spouses and focused on tools and techniques for maintaining crucial legal and government benefits. The second session, geared towards men with hemophilia B, focused on “five secrets" to overcoming fear, depression and despair. The talk was led by Matthew Barkdull MS, MBA, LMFT, MedF. Matt is a member of the hemophilia community and a. certified medical family therapist with more than twenty years of experience.

In the afternoon, the men came back together for a session on the “mechanics of physical intimacy” led by Alice Anderson PT, DPT, MS, PCS, a physical therapist with long-term experience in the hemophilia community. Alice went over some of the challenges presented during physical intimacy for individuals with joint damage or chronic pain. She handled what many consider a very difficult subject with great openness and sensitivity.The day ended with a fun, interactive murder mystery game called “Murder on the Titanic!” with more opportunities to share, interact, renew friendships and create new bonds.

Sunday’s program opened with another great tai chi and meditation session led by Rick Starks and a rap session led by Wayne Cook. These were followed by a session called “Getting Back on Track “focusing on forming positive habits and sticking with them. The session was led by Debbie de la Riva LPC, a community member, mental health first aid instructor and founder of Mental Health Matters Too. The program concluded with a session called “Finding Happiness with Stress Management Tools” led by Catherine Canadeo CHHC, AADP. Catherine is a Certified Holistic Health and Life Coach who helps promote healing behaviors and happy, healthy lifestyles.

The feedback we have been given from many of the participants has been extremely enthusiastic. These are just small samples of the many comments we have received:

“it has been a great experience to connect with some old friends and make new friends at the retreat. These programs are great occasions to connect with fathers who have already gone through similar situations!”

“every time I get the opportunity to participate in one of the Coalition B retreats it brings so many emotions to me. It really helps me from going into depression. It helps me see that I’m not alone and creates a family bonding community experience. “

“the CHB retreats are an extremely vital component of my health and well-being! They are well designed with a great balance of educational sessions and time for peer support and networking.  They also have a very comfortable atmosphere that makes it easy for the participants to open and honestly deal with the tough issues of life living with hemophilia B. The Coalition for Hemophilia B is an organization that truly puts the needs of their constituents above all else and we recognize it.”

“I really enjoyed this retreat. It was my first time and I was able to communicate with people who are having the same day to day struggles as myself.  I think that everyone in the community needs these retreats to be able to learn and communicate with one another as they go through similar struggles in life. It’s life changing”

The Coalition for Hemophilia B expresses our deep gratitude to Pfizer, the sole sponsor of this amazing program. We also send our thanks to the speakers, the staff and everyone who did so much to make the event possible.