BY JENIFER FRAKER

The Fall Virtual Women’s Educational and Empowerment Retreat was a great success. During the first week of November, women with hemophilia, caregivers, and spouses from all over the country connected together for a weekend of learning and fun. The Coalition’s COO Kim Phelan kicked off the weekend as she called out different stressors and instructed the women to blow air into balloons each time they identified with one of the stressors she called out. Then, all at once, after almost every balloon was about to burst, the women released the balloons into the air to symbolize letting go of the daily stress that was holding them back from growing and learning. You could see the delight and relief in the faces of the women as they all shifted their focus from everyday stressors to the retreat and the learning opportunities it would offer. 

The first session led by Matt Barkdull, a licensed marital and family therapist. Speaking on “The Art of Boundary Making: Shunning Perfectionism and Embracing Joyful, Balanced Living,” this session provided attendees with a look at how the social trend of comparing yourself to others can lead to depression, despair, doubt and stress. Matt shared steps the participants need to incorporate into their lives in order to embrace who they really are and shift from preconceived ideas of perfection. These steps include seeking support and sharing yourself with those around you. During the session, a lively discussion was held and attendees opened up and shared with others as they moved toward shunning perfectionism and embracing the tools learned for more joyful present living. We look forward to checking in on their progress.

Art therapy was next on the agenda. This session was led by Alicia Gattis, who is a licensed professional counselor from Dandelion Therapeutic Art. Art therapy has been proven to improve communication, concentration, and can help reduce feelings of isolation. The session was interactive, allowing the participants to reflect on their feelings and create art expressing them.  Later the beautiful masterpieces, each unique, were shared with the other women in the community allowing them to bond and grow together during this transformative, healing art session. 

The Saturday morning session began with Cassandra Starks, community member and expert in mindfulness, leading a session in tai chi and meditation. 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. Cassandra’s direction and guidance helped the ladies to flow in movement as stress was decreased and moods were improved with this tai chi session. 

Gratitude and Goals, two very important topics that often get pushed aside in our crazy-busy lives.  Natalie J. Sayer, a renowned certified coach with clients worldwide, helped the women in our community reflect and set goals for ten aspects of their lives, as she presented the session, “2022: A Yearlong Vision for You.”  The first visualization identified things they were grateful for in each of these areas.  The value of this exercise was to acknowledge what is going well and to build on those successes when setting goals for 2022.  Gratitude helps to shift the mind to what is possible.  For the second part of the presentation, participants visualized possibilities for 2022, once again exploring ten areas of life.  From that visualization they set a vivid intention to better their lives in 2022.  Some of the participants shared some of the steps they planned on taking to help them achieve their goals. We look forward to checking in on them to see how they are progressing toward their goals.

Psychologist Dr. Joel Minden educated attendees on the benefits of cognitive behavioral therapy (CBT), which is an evidence-based treatment for depression and anxiety. “The Power of Cognitive Behavior Skills to Work Through Depression and Anxiety” was a session that empowered attendees how to understand and relate differently to difficult emotions when they appear.  This powerful session provided strategies for tackling feelings head on and allowing our authentic feelings and thoughts to exist. 

Following, Claire Louise Clifton from Ireland brought us into “Mindful Movement and Dance,” which has many benefits, including the power of movement and checking in with your body in a way that can help you lower stress levels, release negative energy, and strengthen your mind-body connection. 

Saturday afternoon continued with two powerful advocacy sessions including one session specifically for women with hemophilia, “Women with Hemophilia Empowered: Tools for Self-Advocacy '' facilitated by B. Patty Eastin, Rare Disease Patient Affairs Liaison from Pfizer and Eva Felix MSA-HCM.  Participants in this session were given practical tips to help learn self- advocacy, including self assessment, setting goals, communication, and building a support network.  Participants looked at the benefits of open communication and self advocacy in the treatment of hemophilia for themselves and their loved ones.. Simultaneously, caregivers and spouses attended “Balancing Emotional Wellness”, with Jackie Mosca, MBA. In this session participants were given an overview of how emotional health impacts the hemophilia community, what signs/symptoms to look for, and how to encourage dialogue with health care providers for better health outcomes.

The day was packed with relevant, timely content, as Attorney Donnie Akers, ESQ shared valuable legal advice to help participants learn how to secure their futures and the futures of their children, during the session,  “Legal Tools Tips To Avoiding Poverty & Maintaining Your Child’s Benefits.” This was a great question and answer workshop that covered topics like medical powers of attorney, estate planning, and preventing the loss of Medicaid. 

Late afternoon, attendees were offered two sessions on the topic of financial health with Ellen Kachalsky LMSW, ACSW speaking on “Navigating Finances and Disability Issues.”  In this session participants learned about the differences between SSDI and SSI and discussed financial considerations one must have when living with a disability or potentially limited income. In the other session the topic was on “Relationship Challenges During the Daily Grind: Let’s Talk

About It” with David Rushlow, LMSW and Karen Boyd, LMSW facilitating a highly interactive session where participants had the opportunity to explore effective communication skills and navigate intimacy during challenging times.  

As the evening drew to a close, the women enjoyed the well known “Chit Chat and Chocolate” session. One of our most intense sessions, moderated by psychologist Dr. Mina Nguyen-Driver as Aamina, Milinda, and Tiffani shared their stories of strength and resilience. The attendees also shared their stories and created deep bonds over their common experiences living with hemophilia B. 

The last session of the day was game night. This provided an opportunity for community members to play and laugh together while strengthening their bonds as hemophilia B community members. 

 The last day of the retreat began with a relaxing round of Tai Chi with Cassandra, followed by a workshop led by Shellye Horowitz.  Shelly presented, “Partnering with Providers for Care,” a workshop that empowers women with tools and information which help them improve their health outcomes with providers treating bleeding issues. 

Afterwards, Dr. Amber Federizo presented, Menstruation and Intimate Health, a session that allowed women to enter the “no embarrassment zone” and discuss important issues and learn more about their bodies and empower them to ask questions when seeing their doctors.

In the last session of the weekend, Catherine Canadeo CHHC, AADP led the women on their journey to finding happiness by “Focusing on how emotional wellbeing is tied to your physical health. Catherine expertly guided the women on their journey by educating on how your emotional well-being, proper self-care, and nutrition are tied to your overall physical well-being.

Participants shared many positive reflections about the on the weekend program including:

“The Coalition for Hemophilia B Women's retreat has changed my life forever.  Getting together with all these women from the hemophilia B community who are dealing with the same issues as I am, has always given me a sense of relief that I'm not alone. I know I can count on CHB and all the ladies I have connected with.  Coming to this retreat allowed me to learn about new topics, create bonds with new women in our community and helped me strengthen my friendships with my Hemo B sisters. This retreat gave me an escape from everyday madness! What an Amazing Experience!!!”

 “And again, the Coalition did not disappoint! What a wonderful women’s retreat from start to finish. Although we couldn’t be in person, they made it just as special as though we were! Connecting us with speakers and giving us tools to better our lives I want to thank everyone at the Coalition for making it such a wonderful event!”

“First of all, I want to thank the Coalition for Hemophilia B for the women's retreat.  For me, it is spectacular, we learn about our bleeding disorder and the many different important issues for women and that can really help you in different areas of your life, such as mental, emotional, and physical health. Another important part of the retreat is the opportunity to feel so warm and welcomed with all the wonderful women who attend. These women including myself share our experience so we can help each other with current issues and to strengthen bonds.  Personally, when I return to my home life, I feel renewed, and I take the good vibes and great experiences with me as I face my everyday.Thank you to the sponsors this is a very much needed program.”

 “I had such a nice time connecting with all the ladies. Everyone is so helpful, especially during this transitional time(starting prophy after 5 years of on-demand treatment). I'm so thankful to have the Coalition, and women I've met, and connected with at the retreat to lean on and learn from. These bonds are so important and special to me virtual or in person, being able to express my concerns with others who have had such similar experiences with B has been so wonderful.” 

We are so thankful to Pfizer for sponsoring our Fall Women’s Retreat 2021 as it allowed our community to have a unique experience of empowerment and education. We are also thankful to our speakers, participants, and team for making it a weekend to remember.