RENEWAL funds amyloidosis research projects
In December 2014, critically acclaimed film and stage actor Michael York and Paul McComas, MA, an award-winning author and philanthropist, launched an initiative they named RENEWAL (Research Exploring New Amyloidosis Learning) to call attention to amyloidosis, a rare disease that occurs when abnormal proteins called amyloid build up in the body. Depending on the organs involved, amyloidosis can cause fatigue, heart failure, liver and kidney damage. Treatment includes chemotherapy, steroids, and sometimes a stem cell transplant. The disease, while relatively rare, has devastating effects on patients.
The goals of the RENEWAL program are to increase awareness about amyloidosis, provide support and validation to amyloidosis patients and their families, and to encourage donations to fund research that will identify new treatments and, with time, a cure.
To date, RENEWAL has provided funding for the following research projects:
Cardiac Amyloid Imaging
This project involves a pilot trial of the use of new nuclear medicine agents active in Alzheimer’s amyloid plaque to image AL amyloid. Negotiations are underway with the manufacturer to provide the drug at subsidized cost.
Patient-Centered Outcomes in AL Amyloidosis
Patient-oriented outcomes, specifically disability and health related quality of life, are extremely important, but yet poorly studied, issues in AL amyloidosis. Froedtert & the Medical College of Wisconsin is prospectively collecting these outcomes at multiple time points in the first year after the diagnosis of AL disease. impact on staging, prognosis and survival of patients is being studied. Delineating these important effects of AL amyloidosis has immediate clinical and research implications. This will help better planning and conduct of clinical trials in AL amyloidosis, allowing clinicians to provide data-driven counseling on the magnitude, trajectory, and durability of reduced disability and improved health related quality of life that can be anticipated after the diagnosis of AL. This information could impact care and improve outcomes for patients with AL.
Elimination of Tissue Amyloid Using Doxycycline
This ongoing prospective phase 2 study of using Doxycycline as a fibril disrupting agent is now enrolling patients.
Join This Effort
Your philanthropic will help advance research and develop new treatment options for amyloidosis patients.
You can donate to RENEWAL:
- Online at: Paytrace. In the box marked “Other Designation Detail” write “RENEWAL” fund.
- Write a check to “Medical College of Wisconsin” with “RENEWAL” in the memo section and mail to:
Medical College of Wisconsin
Office of Development
8701 Watertown Plank Road
Milwaukee, WI 53226-0509
Thank you for your partnership in this important program.
Nashville Gala was a Great Success!
Thank you Nashville! What an amazing evening we all had on Friday, October 16, 2015 for our Nashville Gala, in the beautiful Country Music Hall of Fame. Patients, friends, families and physicians all came together for a night to celebrate and raise funds for our amyloidosis community. Actor Michael York spoke about his amyloidosis journey and gave an impromptu performance of Shakespeare!
Everyone enjoyed the beautiful dinner and wonderful live music from The Kentucky Linemen. The silent auction had many unique items which raised funds at the event. Proceeds will be donated to the Amyloidosis Foundation
and the Amyloid Research Fund at Vanderbilt University Medical Center.
Thank you again to everyone that attended the gala, plus those who donated or volun- teered and took the time to be a part of this special night. Big thanks to our Gala Chairmen Charlotte Haffner, Rosanne Johnson and Daniel Lenihan, MD, Vanderbilt University School of Medicine.
Thank you to our sponsors Alnylam, Prothena and Takeda Oncology. We appreciate your continued support.
2015 Amyloidosis Foundation Patient Day
The Amyloidosis Foundation hosted a team of highly-regarded medical specialists in Nashville on October 17th, to join patients and their families for a day of amyloido- sis information and discussion titled “Raising Awareness, Improving Care and Enhanc- ing New Treatments.
The agenda included medical presentations representing the following institutions: Vanderbilt University School of Medicine, Memorial Sloan Kettering Cancer Center, Boston Medical Center, The University of Tennessee Graduate School of Medicine and Tufts University School of Medicine.
Our day concluded with an open patient forum discussion with speakers Allen Freytag, Leslie Schumacher-McKee, Darcy Tannehill plus Michael York.
They shared their personal stories of triumph and it was empowering to listen to them speak about their struggles, strengths and faith.
Thank you again to our sponsors Alnylam, Prothena and Takeda Oncology for your support at both of our Nashville events. A special thank you to the Vanderbilt University Medical Center and Charlotte Haffner for assisting with the coordination of this event. For more, please see www.amyloidosis.org
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. (Read More...)
Amyloidosis Awareness (narrated by Michael York)
Please visit AmyloidAware.com for more in-depth information.
Michael York: Amyloidosis and Stem Cell Research
VIDEO: Created in cooperation with California Institute for Regenerative Medicine
Michael York's battle with amyloidosis
When actor Michael York found dark rings developing under his eyes it took three years to diagnose amyloidosis, a rare condition that can have fatal consequences
Michael York, the British-born film and stage actor and star of Cabaret, was blessed with youthful skin. He never needed eye makeup for his roles. So when dark rings began to develop, he knew it was something more than lack of sleep.
"I wondered whether it was a virus or something innocuous," he said. "Then in 2009 I was doing a mini-series and noticed it was getting really bad. Because of my profession I could slap some makeup on, but if I had a shower, they would turn purplish, so I began to think something was amiss."
RENOWNED ACTOR MICHAEL YORK COMES TO PASADENA TO BRING AWARENESS TO THE DISEASE THAT HAS AFFECTED HIM AND A LOCAL FAMILY (Pasadena, CA.)
Celebrating his 50th year as a professional actor, Michael York will visit Pasadena to discuss his recent fight with Amyloidosis, a rare and often misdiagnosed disease that connected him to the Fink family locally. This Tuesday, August 20th, 2013 at 4:00 p.m. at the US Court of Appeals (125 So. Grand Ave.) 91105, York will unite with the Fink family to bring greater awareness to this disease before attending a private screening of his critically acclaimed work, Cabaret, now celebrating its 40th anniversary.
The Pasadena Sandwich Company has been a fixture in Pasadena since 1995 as a family owned and operated business. Steve Fink learned the deli business from his parents in the 1950’s before opening his own for the Pasadena lunch crowd so he could be home for family dinners. Steve was diagnosed with Amyloidosis in 2009, so late in the lifespan of the disease that his treatment options were limited and he succumbed to the disease in 2010.
He is survived by his four children: Meghan, Kaytee, Nicole and Jonathan, all whom came together to run the restaurant and establish the Stephen E. Fink Memorial Fund to bring greater awareness, research and treatment to Amyloidosis. They even created a sandwich called “The Big Steve” in memory of their dad and all proceeds are donated into this fund.
It was fate that brought York and Meghan Fink together to bring awareness to this cause. York was finally diagnosed in 2011, after being misdiagnosed, and last year underwent a successful stem cell transplant at the Mayo Clinic in Minnesota.
York has more than 50 movie credits to his name, several Emmy nominations for his television work and numerous Broadway performances. Additionally, he has narrated numerous documentaries and extensive radio work. His accolades are many and his talents unsurpassed. For media questions, contact: Lisa Derderian at 626 945 5169.
‘I’LL NEVER TAKE ANYTHING FOR GRANTED AGAIN…’
Michael York is beaming. It is sprinkling with rain when I arrive at his West Hollywood home, but a welcome fire is blazing in the hearth and Michael is dressed casually in open-neck blue shirt and beige trousers.
He looks every inch the English gentleman – and even more so when he dives off to the kitchen to serve tea and digestives.
He has every reason to be ecstatic. Not only has Michael just celebrated his 45th wedding anniversary and 71st birthday (he looks ridiculously younger than his years), but he’s also, finally, feeling energetic enough to travel – tomorrow, he’s off to Brazil. Because, for the last two years, Michael York has been suffering from a debilitating and potentially deadly illness.