Elevating Each Other Through Music: The Growth and Power of Human Connection

By Renae Baker

Since its inception in 2018, the BEATS music program has evolved into a thriving community centered around music, friendship, and personal growth. More than just a workshop, BEATS fosters a supportive environment where individuals with hemophilia B can connect, inspire, and uplift one another. The program’s expanding reach and deepening impact are a testament to the power of music to transform lives.

“The benefits of this program are long-lasting,” according to Kim Phelan, CEO of The Coalition for Hemophilia B. “I’ve seen the program help alleviate depression and boost self-confidence. I love that people of all ages and abilities participate. What participants learn in four days is amazing. I’ve seen miracles happen in this program.”

The program’s success is undeniably linked to the generous support of CSL Behring, Sanofi, Novo Nordisk, Medexus, and CVS. Their financial contributions and informative sessions were instrumental in enriching the BEATS experience.

“It’s not about the final product, but the journey to get there,” reflects Rick Stark, a returning BEATS participant. “This program has become a haven for Coalition B members to challenge themselves and grow together. Witnessing the collective progress is incredibly inspiring.”

Newcomer teen Jayden shares Stark’s enthusiasm, calling BEATS “amazing.” The program’s supportive environment and unexpected learning opportunities ignited a passion for music within him. Beyond new friendships, Jayden discovered a newfound sense of belonging in the “B Family.”

Teenager Landon expressed heartfelt gratitude to the sponsors of BEATS 2024, recognizing the challenges faced by the community. “I’m thankful for the sponsors, volunteers, and the Coalition for Hemophilia B that make this program possible. Our community deals with numerous obstacles, from chronic pain and limitations to anxiety and depression. Music is an incredible therapy for us!”

The cornerstone of BEATS is its diverse music workshops, led by professional musicians, culminating in a final concert. From brass and woodwinds to guitar, piano, strings, and vocals, participants had the chance to explore their musical passions. The collaborative spirit extended beyond the classroom, with some instructors joining their students on stage, inspiring a new generation of musicians.

“Watching my sons flourish on stage transformed me from a worried parent to a fervent believer in the power of music,” shared Lady J, a Minnesota Blues Hall of Famer. The BEATS program ignited a spark in the Hemophilia B community, inspiring a collective determination to overcome challenges. As participants discovered their voices, they found strength, resilience, and a profound sense of belonging.

“Nashville’s collaborative spirit, where up to nine songwriters can contribute to a single track, inspired the heart of our BEATS program,” shared professional musician Shelby Smoak, co-instructor of the 6th annual event held at the Music City Sheraton in Nashville. “This collaborative approach is essential to understanding the power of collective creativity. We all have the potential to elevate each other.”

Several returning attendees elevated their roles as both participants and leaders this year. A prime example is Chris Maddix, who has immersed himself in the program for six consecutive years. With increasing experience, he has found educational offerings invaluable, from musical storytelling to gig planning. Chris took on leadership by facilitating a “The Rhythm of Reflection” session, exploring the deep bonds formed through music.

A crowning moment of BEATS 2024 was the collective recording of “We Are the World.” This monumental collaboration, made possible by generous sponsors and Adam Smith’s visionary leadership, showcased the power of unity and the transformative nature of music.

During the finale, teenage Landon’s guitar performance alongside Izzy and Nathan F showcased his personal growth throughout the BEATS program. Elec Simon’s drum circle was a standout moment for him, where participants found a collective rhythm and a shared sense of accomplishment. “Everyone was staying in tempo, and it sounded awesome. Great things can be accomplished when working together!”

Returning speaker Betsy Koval, RN BSN, a CSL Behring Patient Resource Navigator, discussed the steps in receiving gene therapy. Also returning from Novo Nordisk was Hemophilia Community Liaison Dan Bull, who presented Six Powerful Tools for Self-Advocacy.

Diane Dimon, from CSL Behring, explained the mechanics of stress and led the group in meditation techniques. Cassandra Titus, Sanofi Community Relations and Education Manager joined live and presented Ben Hale from a remote location. Ben, a professional stage performer, singer, songwriter, and guitar player, told his hemophilia story and played some original music, including a song he’d written for his wife.

At seventy-seven years old, Roberta S captivated us with her bubbly spirit and fierce determination to thrive. She also discussed her healthy habits in an adorable, self-effacing manner. She shared her family’s history with bleeding disorders and performed her song, ‘The Baffling Malady.’

Shelby’s words, “Everybody can elevate the other person,” encapsulate the spirit of BEATS. Through music, we uplift individuals and strengthen the entire community.

Thank you to our sponsors for their generous support!

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Beats Music Program 2024 What Participants Had To Say:

“It was a lot of fun to see people with all different kinds of musical skills and abilities come together at Ocean Way Recording Studio to record a version of “We Are the World.” It was interesting to see the technical side of making music and participate in a community-building experience.”

“It’s the one time of year that I can hang out with my two sons and all three of us can relax with no fear of injuries, non-community criticism or medical crisis.”

“This program is amazing for those that want to learn and become more confident in themselves and their music abilities. Thank you to the sponsors and the Coalition for Hemophilia B for this amazing experience.”

“It is a time to be with fellow musicians that also have Hemophilia B and we all laugh, cry, and encourage each other together.”

“The Beats Music Program means art and creativity to me. It means love and being with family. It means feeling totally supported as a bleeder and as a person.”

“Music has such a positive impact. In a world with far too much negativity, this is something everyone can genuinely look forward to!”

“I was almost to the point where the pain in my knee was so bad that I ignored my guitar completely, but now, thanks to the Beats program, “Carolyn”(my guitar) has made a reappearance in my house! My wife is annoyed, but as I get better, she’ll get used to her!”

“The Beats program has changed our lives for the better. I hope it continues far into the future!”

“The Beats program is like family to me. I have seen the younger generation play their instruments, and I know they will be playing on television one day when I become an old man. “

“It was an honor and a privilege to attend this program.”

“The Beats Program is a crucial part of bringing the hemophilia B community together. It’s become the highlight of my summers, and I look forward to participating again next year.”

“The Beats program has helped me so much. For most of my life I’ve been afraid of public speaking. Performing was never an option, but being with my B family, I did it. Every opportunity to try was given and encouraged to all. I am so thankful for all the sponsors that help the coalition.“

“This project will definitely be at the top of my list of all-time greatest projects that I have participated in.”