The BEAT Goes On!
BY RENAE BAKER
Of all the hats I wear within this wonderful organization, my favorite participation happens at The Beats music program.
Leaning into the science behind the power of music to improve quality of life, Kim Phelan and Coalition president Wayne Cook envisioned a program that would serve people in the hemophilia B community who have interests not addressed in other programs. Wayne, who has severe hemophilia B, knows firsthand how effective therapy music can be for depression and other chronic illnesses. He felt that The Beats music program would open doors for people with hemophilia B, to express themselves and form bonds.
I remember arriving at The Gaylord Opryland Resort Hotel in July of 2019. After being warmly greeted, I sat down to lunch at a table of enthusiastic Beats participants and sponsors of the event. Throughout the next four days, I would have my eyes opened to what it means to live with hemophilia B. I would hear how challenging the lives of people with this bleeding disorder have been. I would also learn how life-affirming and joy-filled the Coalition events are that bring this ever-expanding family together! The Beats 2019 was such a resounding success that leadership confirmed that it would become an annual Coalition program. Soon, I became part of The Beats 2020 planning committee.
2020 – as they say in Minnesota – “Oofda!” The Coalition leadership and staff rode the “Corona Coaster” through uncertain months of postponing multiple live events, cancelling and rescheduling flights, accommodations, speakers and more. They went into overdrive purchasing equipment, software, and training to be able to conduct programs remotely. I don’t need to tell anyone reading this newsletter that The Coalition for Hemophilia B is no stranger to overcoming adversity, and The Beats 2020 program was no exception. Naturally, we missed being together, but we still found our way to loads of laughs, meaningful connections and comforting musical vibes through Zoom.
We began 2021 cautiously optimistic about resuming live events as we tracked our nation’s vaccination trends. In May, happy dances took place across the country, as Kim announced that That Beats 2021 would be a live event in July. Once again, we would join together, in music, at The Gaylord Opryland Resort and Convention Center in Nashville! The participation sign-ups came in swiftly with many returnees and some newcomers as well. The ages of the participants spanned five decades, with the youngest being 17, and the oldest being of the set who call themselves “The Old Farts Band.
Adding to the group’s diversity were musical tastes and experience levels. But what we all had in common were hearts full of song, love for our hemo B family and proof that we had been fully vaccinated against COVID-19, thanks to the strong Coalition leadership.
There was electricity in the air on July 14, as we reunited with our friends, and made new ones. Wayne gave a welcome presentation followed by Robert Friedman, who joined us via Zoom. Friedman, an internationally recognized speaker and author in the world of health, gave a presentation called “What’s So Funny? The Rhythm is Going to Get You,” which launched us into animated group participation and spotlighted how rhythm and laughter are two activities that benefit us mentally, emotionally and physically.
After dinner, Dezarae Tate, RN and Tim Ringgold, MT-BC presented “Common Connection and Music Therapy for Stress Management,” with Ringgold via Zoom and Tate in the room with us. Between the two, they discussed bleed protection, factor levels, dosing, how managing stress impacts managing a bleeding disorder and how music can create sustainable benefits to your body and mind.
As each day of programming wound down, there were opportunities to deepen connections with fellow Coalition members by going to the designated Beats hangout and jam room and collaborate on music. Sheer musical magic has happened in that space!
The next morning, Elec Simon and his fellow drummer Ben, led us all in what was modestly billed as “Percussion Session,” and yes – we drummed our hearts out – but as anyone who was present will tell you, it was so much more. Simon, a former NYC street busker and subway platform musician-turned-professional performer in the Off Broadway hit STOMP, now performs all over the world, delivering life lessons while conducting rhythmic group participation with drumsticks on five-gallon, plastic paint buckets. He says it’s a rhythm based on the heartbeat. I can’t imagine a more perfect guest for this program! We loved him in 2019, and after suffering through the devastating blows the pandemic dealt professional performers, Simon had new perspectives to impart to us. He shared how he, as an entertainer, had struggled with a lack of work during the pandemic, which led to depression. Like so many of us in showbiz, Elec had to find other means of work. Then he brought down the house when he related a story of how he had started driving a school bus to make ends meet. “A little boy gets on the bus says, ‘Me and my dad saw you on TNT last night. What are you doing driving a bus?’ I said, ‘I’m driving you to school, boy, go get in your seat!’”
Elec shared his honest story about his recent depression and loss of faith. “You never see the people who motivate people get down. I’m a motivational speaker. I’m always the one saying, ‘Never give up!’ And I’m lookin’ in the mirror, and I’m like, ‘Bro – you broke!’ I was trying to speak to myself, but I broke down.” Months into his dark period, while lying in his bed one morning, he felt electricity coursing through his body. He heard his voice inside of him saying “Here I am! I’m back!” Simon wanted to encourage the hemo B family with his story and added his sentiments about how he is learning more and more about hemophilia B. He opened his heart; told us he cares about us and feels like part of the family. He also created a safe space in which others were able to share their own challenges. This crowd wasn’t shy about telling him that he is, indeed, a treasured member of this family. Coalition staff and committee team member Rocky Williams remembers Elec as a highlight of the program. “He blew me away!” He exclaims, adding, “The program exceeded my expectations. Everything fell together without much difficulty. It just flowed. The sessions were really great. I loved seeing the talent from our teachers and our speakers.”
Speaking of talented speakers, up next was Michelle Leona Cecil, a Novo Nordisk Hemophilia Community Liaison, who had already been making a positive impact with her exuberant presence among us. In her presentation titled, “Stop Waiting to Thrive,” Michelle showed us six principles of empowerment we can use every day to help us thrive. Her informative talk was followed by Maxwell (Max) Feistein’s talk on critical listening. Max is a touring musician, songwriter, producer, and comedian with hemophilia. He is an outspoken advocate representing the bleeding disorders community and educates people about hemophilia and mental health through a variety of creative means. Max recently released a solo album called Redefine, which he wrote to shine a light on the challenges of life with a rare bleeding disorder. Max’s contributions to The Beats ’21 were plenteous! In addition to his talk on critical listening, he wowed a class with a guitar riffing workshop and demonstration, and he performed a solo in the concert and jumped into a group number at the last minute.
The group music classes began on day two with the drumming workshop presented by Richard Adams, the guitar workshop by William “Tiger” Fitzhugh and, as previously mentioned, the “Express Yourself Through Song,” masterclass, which I was delighted to lead with the amazing Joe Turley joining us on the piano and chiming in with his musical intuition and experience.
For the drumming workshop, Adams instructed the drumming participants in how to work with other musicians and use timing and the metronome to bring music in sync. He also worked with the class on how to use stick and feet control, even with joint issues, to add to their repertoire of drum licks.
Tiger worked with the guitar participants on using the guitar as their unique “voice” and also worked with them on songwriting and how to write unique guitar riffs. Bryant, a participant in the class said, “As a guitar teacher, Tiger can quickly figure out his students' level of ability and then provide lessons and exercises that are difficult enough to be challenging, but not so difficult as to be frustrating. As a result, I came away from his sessions feeling I'd learned some things I could really apply to my playing."
Obviously, I had a front row seat to the vocalists’ class where we jumped into songs ranging from Billie Eilish to Stevie Nicks, vintage to modern, blues to gospel, and two performers, (Dylan and Andrew,) performed songs they had penned themselves! “Ivory” Joe Turley, an accomplished award-winning composer bandleader, pianist, saxophonist, and harmonica player, worked with each singer to ascertain the best key, tempo and other nuances, and helped each singer feel comfortable enough to step outside of their safety zone into the performance directions I suggested to them. Joe, who wrote the recent Ringo Starr hit, Zoom In Zoom Out, said, “We had a seriously talented, fun and diverse group of brothers and sisters all pulling for each other. It was an oasis of togetherness and positivity and a healing break from all the isolation.”
Belle, our youngest vocalist, said of the whole program, “What I loved was the immense amount of support and love from each and every individual. The instant feeling of home and of family is what I always look forward to in these events and am never disappointed. I learned that the butterflies in our stomach are not your enemy, and that if you don’t have butterflies, your performance isn’t going to be that great. My inspiration to grow and to become better at singing came from the support that each and every one gave me.” The butterflies to which Belle is referring are otherwise known as performance nerves. I addressed those in a new talk called, “Befriending the Butterflies – Harness the Power of Performance Nerves,” helping the performers to give stronger, more purposeful performances.
On day three, singer-songwriter Trevor Martin who has hemophilia, impressed us all when he sang and shared the story of two of his original songs and his songwriting process. He was “amazing” and ran into overtime. Also on day three, we had the opportunity to take a tour of The Robot Factory, a recording studio in East Nashville, run by producers Jeremy Bose and the Coalition’s own Adam B. Smith. Adam, who has a young son with severe hemophilia B, was new to the Coalition when he jumped in with both feet and lent his talents to the inaugural Beats program in 2019. The very moving “Silver Linings” music video which resulted from the 2019 Beats was mastered by Adam. He was a major key to the success of the remote 2020 Beats, as he created rehearsals tracks, helped the singers find their “groove,” collected home recordings and mastered them into videos we could all be proud of, including the group number, “That’s What Friends Are For.” Smith was part of the 2021 Beats planning committee and ran the sound and lights for the guest speakers and the final performance, adding a new level of production values to showcase the participants’ talent and growth!
One of the thrills of The Beats programs held in Nashville is taking in The Grand Ole Opry Show. It’s not just a show, it’s a historic country music tradition that dates back almost one hundred years! Some Beats participants showed their spirit by dressing in their county-western duds, and the electric energy from the special night was still buzzing at the breakfast tables on day four.
Day four on Saturday was performance day. After one more rehearsal with the teachers, the singers, drummers, and guitar players went to their rooms to make themselves stage-ready for the culmination of their brave work of stretching themselves and furthering their musical craft. As curtain time drew near, the audience seats filled with coalition members, including some non-Beats members who travelled to Nashville to show support for their hemo B family. Also present were The Beats sponsor volunteers from CSL Behring, CVS, Medexus and Novo Nordisk. Photographer, Lindsay Goats, who took such stunning photos of the program participants in 2019, was joined by Eliza and Baxter Linney to photograph and video the four days and captured the musicians and singers on stage and audience members as they cheered on their tribe. Everybody joined in the closing number, Lean on Me, and then the kind of celebration that stems from personal triumph ensued.
Looking back, Milinda raved, “The performances really surprised me. Who knew we had so much talent in this community?!” One of those performances was by Kendall, a specialty nurse and mother to a son with hemophilia B. She had never sung a solo in public before and came to the program with an open mind and a willing spirit. She worked on her chosen song in the masterclass and then took advantage of music jam times with other musicians in the evenings to have an even fuller experience. As one of those musicians, returning Beats participant, Rick, said, “As a ‘veteran’ of The Beats program, I found it inspiring to watch others grow with the guidance they received, especially Kendall. To see her, a person who has never sung before, challenge herself, then to have another song thrown at her in the last minutes leading up to the performance made my heart sing!” That’s right, Kendall said “Yes,” when Rick asked her to sing another song with them from the stage, with no rehearsal time! It was roundly agreed that she is a natural performer.
Ron, who led the whole audience singing “Right Here, Right Now, called it a wonderful experience to have enjoyed the connection and memories made. Stephen, who took part in the drumming clinic, said, “I really enjoyed everything about this program. I liked seeing everyone, increase my drumming skills and meet great musicians.
“This was my first time attending this program live,” Fel relates. “Last year was virtual, but as always, I really love the connection with my fellow brothers and sisters, and to be connected by music is even greater.” Fel felt that he learned a lot from his time spent with the coaches and teachers. “To get those one–on–one experiences with Renae, Elec, and Richard was new and inspired me to let go of my fear of singing in public. It helped to have that amazing pianist, Joe Turley, and my amazing coach, Renae, giving me all the tools to succeed in my performance.”
Bryant, who took part in the guitar clinic, wanted to highlight the many opportunities The Beats program offers Coalition members to play with other musicians. “I’m a bit of an introvert and a homebody, and I really have not made much of an effort over the years to seek out other folks to play with. So being able to rehearse and perform with a really competent bunch of guys, (Ray, Rick and Wayne) was a great experience for me. The other thing I’ll mention is that by having a program centered on music, I found it a lot easier to strike up conversation and get to know the other participants than it would have been at a ‘normal’ (medical/educational) hemophilia event. For example, I had a nice, long chat with Max Feinstein on the final night that I’m fairly certain wouldn’t have happened if we hadn’t had music as a conversational launching pad. It’s a great program. I hope I have the chance to participate in it again.” Bryant also influenced a young audience attendee with hemophilia to begin playing guitar. He spent some time with him after the final night and now this young new guitar player cannot wait to attend this program. Connections are so powerful!
Max, himself, had some thoughts about the program. “Anthony Kiedis refers to music as ‘The Great Communicator,’ and during my time at The Beats program, I was as aware and appreciative of that sentiment as I have ever been. In a community that often prizes activity because it represents a functioning body, the arts can seem neglected. This program is proof-positive how vital and valuable a connection through the arts can be.”
Milinda raves, “Let me tell you! The Beats program couldn’t have gone any better! The programs by the professionals who taught us were so awesome! The talent they have for teaching us new things really lit my curiosity. All the music sessions and the fabulous Joe Turley on piano and harmonica were such amazing experiences.” She credits the production team. “Everything was put together so nicely! The hard work they put in really paid off!” It inspired me to remember we all have friends we can lean on. We have music we can count on to bring us joy, and that connection we have together will last a lifetime. Music is happiness. It’s therapy. It’s love! I look forward to seeing what the future holds for The Beat. It keeps getting better!
Kim Phelan reflects, “When the program first began, the concept was good, but what actually happened exceeded my wildest expectations. Community members from all walks of life with unique talents playing different types of music styles totally merged. It flowed effortlessly, and everyone celebrated and cheered each other on.” She was enriched to see how this program brings together people who may not attend other events. “A week later you can still feel the energy from this program. It’s not just music; it’s collaborating, sharing, bonding and finding a support system of like minded people. It also helps with depression. The support, love and energy this program shines on all the positives.” Kim found the final performance very moving. “I was sitting in the audience just admiring each participant’s unique song genres and styles, and I was crying tears of joy. Some even wrote their own songs.” Already thinking about how to improve The Beats, Phelan exclaims, “We need a bigger stage and a bigger room! It has grown!”
Kim is always mindful and appreciative of our sponsors and has this message for them:
“Thank you for believing in us and this program. We knew it was going to fill a void in the community. We knew it was good for depression and would further bring more in the community together. We knew it would not be easy to put together but we did it and we are so thankful to our sponsors who also bring in valuable programs during this event for helping us bring our vision to reality especially for those do not normally reach.” To prospective sponsors, she says, “Sponsor this program, and you will not regret it! Come once and you will see why!”
Transcending pain and achieving solid gold relationships through music. Does it get any better than that? I cherish my time witnessing and participating in musical magic. If you have a desire to express yourself through music, I hope you’ll join us next year!
A special thank you to our Sponsors:
IMPRESARIO LEVEL
CSL Behring
PRODUCER LEVEL
Novo Nordisk
CONDUCTOR LEVEL
Medexus Pharma
PERFORMER LEVEL
CVS Specialty
More photos from the Beats Music Program can be found on our Facebook Page.