Acclaimed actor Michael York launches RENEWAL at MCW
On Tuesday, December 9, more than 100 guests attended the launch of RENEWAL (Research Exploring New Amyloidosis Learning) at the Froedtert and the Medical College of Wisconsin Cancer Center, featuring critically acclaimed Anglo-American film and stage actor Michael York – who had been afflicted with amyloidosis for a number of years and is now recovering.
This rare, and too often fatal, disease occurs when abnormal protein – called amyloid – builds up in the body. Depending on the organs involved, amyloidosis can cause significant fatigue and heart failure, and cause the liver and kidneys to shut down.
Treatments for the most common type, AL amyloidosis, may include chemotherapy, steroids and stem cell transplants.
York, a prolific actor, recording artist and author, has more than 70 screen credits, including the title role in the popular science fiction film, Logan’s Run, opposite Liza Minnelli in Cabaret, Tybalt in Romeo and Juliet, D'Artagnan in both The Three Musketeers and The Four Musketeers, John the Baptist in Jesus of Nazareth, and Basil Exposition in all three Austin Powers movies.
While shooting a mini-series in 2009, York began to notice dark circles under his eyes and a general feeling of being unwell.
He then embarked upon a long and frustrating journey to get an accurate diagnosis – consulting with a number of widely respected doctors; at one point, he was incorrectly diagnosed with, and treated for, multiple myeloma. It was more than three years before his health mystery was solved. York credits his wife, Pat, with the eventual breakthrough.
She contacted Dr. Robert Kyle at the Mayo Clinic, a multiple myeloma pioneer and an expert in amyloidosis. While Kyle, at age 84, no longer sees patients, he introduced the Yorks to several colleagues at Mayo, where tests confirmed amyloidosis.
In July 2012, York underwent an autologous stem cell transplant, which involved the removal of his immature blood stem cells, followed by high-dose chemotherapy to rid his body of diseased or damaged marrow. The treated stem cells were then re-injected into his body. This risky procedure took about six weeks, but according to Pat, “he sailed through it.”
A recent body scan showed that most of the amyloid deposits had disappeared. The rings under his eyes also have been slowly receding.
York was delighted to report that less than a year following his stem cell transplant, he appeared on stage at the 2013 Kennedy Center Spring Gala for a single performances of My Fair Lady, in the role of Colonel Pickering. “Tonight, old man, you did it! You did it! You did it! You said that you would do it, and indeed you did!,” York sang enthusiastically to the guests assembled at the MCW Cancer Center, reprising the Colonel’s number and implicitly acknowledging all those responsible for “doing it” – for enabling recovery from the disease.
I’m feeling great, not least because I am able to travel again,” York said. “I’m finally getting my life back. I’m in contact with amyloidosis patients all over the world, and traveling around to raise awareness about amyloidosis, especially about its symptoms, which are frustratingly vague. It’s the perfect actor’s disease because it mimics so many other afflictions.”
York added that he has undertaken a number of lectures as well as recordings, including one about amyloidosis that is posted online. Most recently he has spent time authoring a new book about his experiences, entitled Adventures in Healing: From Mayo Clinic to John of God.
“If it can help but one sufferer, then it will have achieved its purpose,” he affirmed.
York’s presence at the MCW Cancer Center kicked off the RENEWAL initiative, which was co-conceived by York and Paul McComas, MA, a Milwaukee native and trustee of the Camille A. Lonstorf Charitable Trust.
An author, musician and avid fan of both York and Logan's Run, McComas got to know York while collaborating on the sequel novel, Logan's Journey – an experience which inspired him to join in the cause to help amyloidosis patients. The duo selected the program’s name to reflect the concept of life renewal (a key theme of Logan’s Run) as it applies to patients.
All attendees at the December 9 event received an ankh (also known as “the key of life”), which figured prominently as a symbol of “Sanctuary” in Logan’s Run. For amyloidosis patients, the concepts of “Sanctuary” and life renewal are highly germane to their experiences of struggles and perseverance.
The event began with a welcome by Mary Horowitz, MD, MS, Robert A. Uihlein, Jr. Chair in Hematologic Research and Chief, Division of Hematology and Oncology. She told the guests that MCW is devoted to searching for greater understanding of, and treatment for, amyloidosis.
“In the current environment, medical science is a team sport, with collaboration among many individuals including patients, doctors, researchers, nurses, philanthropic partners and community advocates,” Horowitz noted.
She then introduced Parameswaran Hari, MD, MRCP, MS, the Armand Quick – William Stapp Professor of Hematology, and Director, Adult Blood and Marrow Transplant Program, who later shared his ongoing research into amyloidosis.
“Dr. Hari is committed to ensuring that our patients receive state-of-the-art care,” Dr Horowitz said. “Under his leadership, we have doubled the number of patients we serve and tripled the number of transplants. We see about 30 new amyloidosis patients each year, and are currently undertaking several active studies into this disease.”
Dr. Hari discussed MCW’s groundbreaking minimally invasive fine-needle aspiration of the abdominal fat pad which is now being used all over the world to help diagnose amyloidosis. He also shared MCW’s burgeoning reputation for expertise regarding cardiac involvement in amyloidosis and new treatment options for the disease.
McComas specifically addressed those in the audience who are living with amyloidosis, telling them, “Your courage is my inspiration.” He described the origins and meaning of RENEWAL, then praised Dr. Hari as an “innovative, visionary investigator-clinician and a purveyor of hope” and presented him with a trophy from the Lonstorf Trust.
Next, McComas delivered a glowing introduction of York, his “hero onscreen and off,” who “leads by example, offering up his valuable time and his considerable talents in a kind and compassionate fashion – one that encourages others to do the same.”
York told the audience that he was extremely pleased to join them for the launch of RENEWAL. “We may be a small acorn today, but large oak trees are hopefully in our future.
I can’t wait to see what Dr. Hari will bring about through his research.” He also praised “Paul’s incredibly hard work and great courage while still recovering from a serious accident,” as well as the help of Froedtert and the Medical College of Wisconsin staff for their assistance in the event. York briefly discussed his journey with amyloidosis and read excerpts from Adventures in Healing.
Then, quoting the famous Robert Frost poem, he declared, “I have promises to keep, and miles to go before I sleep.” After reciting Shakespeare’s Sonnet 116, he continued, “All of this is about love and relationships. The only important thing is love – not fame.
I was somewhat wary of celebrity endorsement, but I saw how it worked for Michael J. Fox and Parkinson’s disease. I want to be uninhibited about my support for amyloidosis, so I urge you – don’t be intimidated. Get out there and yell your head off!”
The program also featured a presentation by McComas to Froedtert & the Medical College of Wisconsin of gifts of $10,000 and $3,000 from the Camille A. Lonstorf Charitable Trust and the McComas Family Charitable Trust, respectively, in support of Dr. Hari’s amyloidosis research. Following an inspirational song written and performed by McComas, and a brief question-and-answer session with York, McComas and Dr. Hari, York personally greeted attendees (who included amyloidosis patients, their families, caregivers and individuals interested in learning more about the disease) and signed autographs.
Donations to amyloidosis research at MCW can be made online at https://ecommerce1.mcw.edu/p-213-amyloidosis-research.aspx.
More information about amyloidosis and amyloidosis support groups are available at http://www.amyloidosis.org and http://www.amyloidosissupport.org/index.html.