Susan Brecker: A Wife Becomes a Film-Maker and Advocate to Raise Awareness about the Need for Bone Marrow Donors
Her husband, Michael, was a GRAMMY-award winning tenor jazz sax player who counted Herbie Hancock and Pat Metheny among his peers. His complaint of a backache while on the road performing turned into a diagnosis of myelodysplastic syndromes (MDS) – a disease he had never heard of, and one that his initial doctors misunderstood.
“Michael was in his 50s, active and healthy. They told us it was an old person’s disease. It didn’t make sense. We were walking into the great unknown with MDS, something you don’t know what it is until you have it – and something your doctor may not know much about either.” Susan urges patients to get a second opinion, and find a doctor who has treated patients with MDS.
Susan talks about how she and Michael spoke with their young children, then 10 and 14 years old, about his illness. She says, “We started simply and told them more as they were able to take it in. Kids have a way of understanding just that which they can handle – nothing more, nothing less.”
When Michael was told his MDS was incurable without a bone marrow transplant, Susan’s personal journey as an advocate for bone marrow failure disease patients and families began. At first, her mission was simple, find a bone marrow match to save her husband’s life.
With a network that stretched to music venues worldwide, they swabbed thousands of jazz fans at festivals and concerts where Michael and his colleagues performed. Once it was clear that they would not find a match for Michael before it was too late, Susan dedicated herself to finding matches that would save others as a tribute to Michael.
Michael brought his GRAMMY total to 15, when his final album won the 2007 awards for Best Jazz Instrumental Album and Best Jazz Instrumental Performance, Individual or Group in 2008. That album, Pilgrimage, was completed despite being extremely ill in 2007 just before he lost his 2½ year battle with MDS, which by then had progressed to AML. It was his first recording consisting entirely of his original compositions and received stellar reviews upon its release in May 2007.
“After my husband died, I sort of felt like I needed to make a contribution to the community because I’d spent 2 1/2 years walking through bone marrow wards as we all waited for a match,” says Susan. “It became a theme in my own life. With this feeling and wanting to use Michael’s notoriety in a positive way, I thought the best thing to do was to travel around the world with my plea for people to get swabbed for the bone marrow registry. We signed up thousands of new donors and as a result we have been able to match more than 50 people so far.”
“I was reading the New York Times, when I saw an article about James Chippendale, an entertainment and sports insurance broker who is a leukemia survivor who is co-founder of the Love Hope Strength Foundation, and decided to write him to say I wished him luck and wished that Michael’s search for a donor had turned out as well,” she says. “James wrote me back and we became friends. After eight months, we brainstormed the idea of making a film that would tell our stories and urge people to sign up for the bone marrow registry to give this gift of life. I had met a young filmmaker, Noah Hutton, who at age 22 had just made his first film, and I knew he was the guy to tell the story. That’s how our film, “More to Live For,” got started.”
It is the story of three people, all shaken by cancer and dependent on a bone marrow match to save their lives. It is a deeply personal account of confronting illness that inspires hope and action, leaving the viewer empowered to become part of the cure by joining the bone marrow registry. More to Live For has been shown at jazz and independent film festivals across the U.S. and around the world. Each time, people are asked to join the bone marrow registry. Susan says, “Any gathering presents an opportunity to test people – concerts, sporting events, bar mitzvahs, weddings, community activities. I am constantly talking with my friends, and they are helping me to get the word out by having donor drives at their workplaces, organizations and events.”
“What science knows about bone marrow transplants and what is possible using blood stem cells is in its infancy,” she continued. It is so important to have everyone in the registry. Today we are only able to help a fraction of the people who need bone marrow transplants. I remember years ago when people first started talking about organ donations, and signing people up as part of getting a driver’s license. Now, people understand this can save lives, and do it as a matter of routine. It’s a no-brainer today for many people. That’s what we need to happen with getting people signed up for the bone marrow registry – we need to make it a no-brainer. Get your cheek swabbed and you might save a life. If someone famous needed a bone marrow transplant, like the President’s daughter, testing would be as commonplace as it should be to help the rest of us.”
Susan invites patients, families and friends in the AA&MDSIF community to show More To Live For in their community along with hosting a bone marrow donor drive in their community. If you need inspiration, listen to Michael Brecker’s music at www.MichaelBrecker.com. To learn more about running a bone marrow drive or fundraising event to help support AA&MDSIF in your community, contact AA&MDSIF Community Development Manager, Martha Crews.
The Aplastic Anemia & MDS International Foundation (AA&MDSIF) created and maintains Stories of Hope as a service to those dealing with aplastic anemia, MDS, and PNH. Some of the stories on this site discuss medical treatment options patients have used; however, these stories are not intended as medical advice and should not be construed as such. AA&MDSIF recognizes that each patient, their treatment options, and the circumstances surrounding their bone marrow failure disease, is unique.
Inclusion of information in a Story of Hope does not constitute an endorsement or recommendation by AA&MDSIF of any medical care provider, treatment practice, medication, product, or manufacturer. Patients are encouraged to seek medical advice from a qualified hematologist/oncologist and to discuss their individual questions and concerns with their doctor.
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