The Amyloidosis Foundation
The Amyloidosis Foundation began with the vision of two patients, Don Brockman and Dennis Krysmalski. Don’s desire to support research and Dennis’s commitment to support patients and increase awareness has been the driving force behind the foundation for the past decade. Don’s widow, Mary O’Donnell, has picked up the mantle and led the foundation to become the success it is today.
Our key priorities are:
- Raising awareness in the medical field for an earlier diagnosis.
- Educating medical professionals through our Grand Rounds program and attendance at medical conferences.
- Prioritizing a research agenda through grants and partnership with the Amyloidosis Research Consortium.
- Empowering patients through our comprehensive range of services, including accurate up to date information.
By phone, email or mail, contact us today. Online form below. We are here to help.
7151 N. Main St., Suite 2
Clarkston, MI 48346
The Amyloidosis Foundation is a non-profit 501(c)(3) corporation.
The Amyloidosis Foundation owes its existence to many people.
The Amyloidosis Foundation is the result of the merging in 2007 of the Amyloidosis Research Foundation and the Amyloidosis Support Network so that the missions of both organizations could be brought together.
The Amyloidosis Research Foundation was founded by Don Brockman and Mary O’Donnell in 2003. The ARF mission was to support medical and scientific research for amyloidosis.
The Amyloidosis Support Network has roots back to 1999 when Terry O’Malley began helping patients and developing a website that was dedicated to patient support and awareness. Unfortunately, Terry passed away in 2000 due to complications from Amyloidosis. Dennis Krysmalski worked on the website with Terry and continued the vision. Then in 2004, he officially established the ASN. The mission was to make a difference in the lives of patients and families, and to increase the awareness of amyloidosis among the medical community.
Merrill Benson, MD
Indiana University Medical Center
Raymond Comenzo, MD
Tufts Medical Center
Rodney H. Falk, MD
Brigham and Women’s Hospital
Morie Gertz, MD
Mayo Clinic – Rochester
Giampaolo Merlini, MD
University of Pavia, Italy
Vaishali Sanchorawala, MD
Boston Medical University – Amyloid Treatment Center
Douglas Sawyer, MD, PhD
Maine Medical Center
Board of Directors
Meet our Leadership
Mary founded the Amyloidosis Research Foundation in 2003 with her late husband, Donald Brockman, as a means to promote research for systemic amyloidosis. The foundation merged with the Amyloidosis Support Network in 2007 bringing more concentration to patient support by providing information about diagnosis and treatment.
With the help of volunteers and staff, Mary initiated the distribution of informational packets by developing a comprehensive medical community education program. In addition to her many other duties as President of the Amyloidosis Foundation, she coordinates Grand Rounds at institutions throughout the U.S. and Canada.
Uria is a native of San Diego, currently living in New York City with her husband and son. She is a Vice President in corporate finance at Morgan Stanley. Her mother died of Primary Amyloidosis in 2006, and since then Uria has dedicated her time raising awareness and support for this disease.
She co-founded and hosts the NYC benefit for the Amyloidosis Foundation. Uria also ran the San Diego Rock ‘n’ Roll marathon in honor of her mother. In her free time, she enjoys playing tennis, running and spending time with her family.
Uria has served as the Secretary of the Amyloidosis Foundation since 2011.
Dante is retired from the financial services industry. He now represents the Detroit Pencil Company for office supplies and furniture, as well as the Absopure company for water, coffee and vending.
Golf is a passion for Dante and he lives with his wife in the Metropolitan Detroit area. He is currently the Treasurer for the 21st Century Club, a non-partisan PAC. Dante is also a board member of the Detroit Regional Dollars for Scholars, a 501c3 organization that helps local students prepare for life after high school, through scholarships and academic support, to enable post-secondary success.
Dante joined the Board of Directors as Treasurer of the Amyloidosis Foundation in 2016.
Isabelle graduated as an architect from University College, London. In her work she focused on public buildings and large scale International Projects. In 1996, she was diagnosed with AL Amyloidosis, and she underwent a successful stem cell transplant.
As a patient, she is committed to empowering other patients through knowledge, raising awareness of the disease, and building relations with the scientific community to improve outcomes. Isabelle previously served on the boards of the International Myeloma Foundation and MyelomaUK, where she was active in building their amyloidosis programs.
She now lives with her family in Boston.
Isabelle has served as the Board Chairman of the Amyloidosis Foundation from 2007-2015. She is also the founder and CEO of the recently formed Amyloidosis Research Consortium, a partner organization with the AF. As CEO of ARC, Isabelle will oversee the Clinical Trials Finder for patients, while focusing on increasing the development of advanced diagnostic tools and effective treatments for systemic amyloidosis.
Robert Kyle, MD
Dr. Kyle is Professor of Medicine, Laboratory Medicine and Pathology at Mayo Clinic College of Medicine, in Rochester, Minnesota. He served as the William H. Donner Professor of Medicine and Laboratory Medicine and was Section Head, and subsequently Chairman, of the Division of Hematology. After earning a medical degree at Northwestern University Medical School in Chicago, Dr. Kyle did residency training in internal medicine at the Mayo Clinic. He completed a research fellowship in hematology at Tufts University School of Medicine (Dr. William Dameshek) in Boston, and a postdoctoral research fellowship from the National Cancer Institute. Among his contributions to medicine, Dr. Kyle coined the term Monoclonal Gammopathy of Undetermined Significance as well as Smoldering Multiple Myeloma, Idiopathic Bence Jones Proteinuria, Light Chain Smoldering Multiple Myeloma and Smoldering Waldenstrom’s Macroglobulinemia. He was the first to publish prospective randomized studies on the treatment of amyloidosis. He is recognized for landmark contributions on the epidemiology of Monoclonal Gammopathy of Undetermined Significance. Dr. Kyle has been Chairman of the Scientific Advisory Board of the International Myeloma Foundation for over 2 decades and is still on the Board of Directors and is Chairman of the Scientific Advisory Committee of the International Waldenström’s Macroglobulinemia Foundation (IWMF). He is a Master, American College of Physicians, and an honorary member of the Royal Society of Pathologists, London. He served as the first President of the International Society of Amyloidosis as well as the International Myeloma Society. He was Chairman of the Myeloma Committee of the Eastern Cooperative Oncology Group for 12 years and for 6 years served as Secretary General of the International Society of Hematology.
With research interests in monoclonal gammopathies, multiple myeloma, macroglobulinemia, and amyloidosis, Dr. Kyle has been principal investigator for numerous research studies. Dr. Kyle lectures widely and has contributed more than 1000 articles and book chapters as well as over 1300 abstracts to the literature. A tireless educator, he has helped train more than 200 practicing hematologists. Dr. Kyle was the first recipient of the Robert A. Kyle Lifetime Achievement Award from the International Myeloma Foundation and the Robert A. Kyle Award from the IWMF, and has received the Mayo Clinic’s Henry S. Plummer Distinguished Internist Award, Distinguished Clinician Award, and Distinguished Alumni Award. He was also the recipient of the David A. Karnofsky Award and Lecture from the American Society of Clinical Oncology in 2007 and the Wallace Coulter Award from the American Society of Hematology in 2008. He was given the 2013 Northwestern University Feinberg School of Medicine Distinguished Alumnus Award.
Dr. Kyle has served on the Board of Directors of the Amyloidosis Foundation since 2006.
Martha Skinner, MD
Dr. Skinner is Director of Special Projects, Amyloidosis Center and Emerita Professor of Medicine at the Boston University School of Medicine.
Dr. Skinner received her medical degree from the Medical College of Pennsylvania. She completed her fellowship in Rheumatology at the Boston University School of Medicine. She was the Director of the Amyloidosis Center at Boston University from 1988-2007. Dr. Skinner was the President of the International Society of Amyloidosis from 2010-2012. She served as an Associate Editor of Amyloid: International Journal of Experimental and Clinical Investigation from 1993-2013. Her major research interests include the treatment and research of amyloid diseases. She is the author of more than 350 papers on amyloid disease.
Dr. Skinner has served on the Board of Directors of the Amyloidosis Foundation since 2007.
Giampaolo Merlini, MD
Giampaolo Merlini received his medical degree and specialized in Hematology and in Laboratory Medicine at the University of Pavia. He was trained by Prof. Jan Waldenström in the study of monoclonal gammopathies. He is Professor of Clinical Biochemistry and the Director of the Center for Research and Treatment of Systemic Amyloidosis, Department of Molecular Medicine, University of Pavia, Italy. He is also the past President of the International Society of Amyloidosis and member of the Scientific Division of the International Federation of Clinical Chemistry and Laboratory Medicine. His research focuses on the investigation of the molecular mechanisms of systemic amyloidosis and the development of novel therapies, as well as on the discovery and validation of biomarkers in the management of monoclonal gammopathies.
Dr. Merlini has served as both a member of the Board of Directors and the Scientific Advisory Board of the Amyloidosis Foundation since 2010.
Ray Comenzo, MD
Dr. Raymond Comenzo received his medical degree from Boston University School of Medicine. He completed his internship and residency in medicine at Boston City Hospital, followed by his fellowship in hematology/oncology at New England Medical Center. Dr. Comenzo is Professor of Medicine and Pathology at Tufts University School of Medicine and Director of the Blood Bank and Stem Cell Processing Laboratory.
Dr. Comenzo is board certified in internal medicine, medical oncology, and hematology. He is a member of the International Myeloma Working Group; the Scientific Advisory Board, International Myeloma Foundation; and the Eastern Clinical Oncology Group (ECOG), Myeloma Committee. In addition, he holds memberships in the Massachusetts Medical Society, American Society of Hematology (ASH), and the American Association of Blood Banks. Dr. Comenzo is also a reviewer for Transfusion, Journal of Clinical Apheresis, Blood, Journal of Clinical Oncology, New England Journal of Medicine, Leukemia, Cancer Research, and Haematologica. His major research interests include autologous stem cell transplantation and novel therapies for systemic amyloidosis, gene silencing therapy for light-chain diseases, and the role of proteasome inhibitors in plasma cell diseases.
Dr. Comenzo has served as both a member of the Board of Directors and the Scientific Advisory Board of the Amyloidosis Foundation since 2006.
Charlotte was diagnosed with AL amyloidosis in 2008. She was the first patient to receive both a heart transplant and a stem cell transplant at Vanderbilt University Medical Center. Ms. Haffner has become a titan in the amyloidosis community. She volunteers on behalf of the Amyloidosis Foundation at their awareness booth at medical conferences, leads the amyloidosis support group at Vanderbilt University Medical Center and has made numerous press appearances to generate awareness of amyloidosis. She is an excellent community builder, and has been involved in many fundraisers.
Charlotte was an equine midwife in Lexington, Ky., is an avid fly fisherman, and an accomplished horsewoman who still enjoys riding her horses on her farm in Franklin, TN.
Charlotte has served as a member of the Board of Directors of the Amyloidosis Foundation since 2014.
Dena is happily retired from the corporate world. She has a BA and MBA, both earned while working full time and as a single parent. She is an Amyloidosis widow who lost her husband to AL Amyloidosis (renal) in 2010, seven years after his stem cell transplant at Stanford. Dena has been volunteering at the Amyloidosis Foundation awareness booth at medical conferences for the last seven years and loves every minute of it.
Dena is also the Northern California Amyloidosis Support Group Facilitator. This group just celebrated their tenth anniversary of quarterly meetings. Dena is passionate about Amyloidosis awareness and in addition to her support group she is working on other awareness projects. Two notable and important projects are for physicians: an Amyloidosis App for smart phones and tablets; as well as a CME course targeting multiple medical specialties. Dena lives in the San Francisco Bay Area.
Dena has served as a member of the Board of Directors of the Amyloidosis Foundation since 2014.
Silva graduated from the University of Tirana, Albania and obtained her MBA at the International Business School in Slovenia.
She started her career with United Nations Development Program in Albania and eventually joined the Soros Foundation as the General Manager of the Albanian Branch before leaving the country in 1997. Silva joined the Karmanos Cancer Institute (KCI) as a Project Manager and worked on several research projects. In 2006, she started working as the Program Coordinator for the myeloma and amyloid program. During her time as Program Coordinator, the Karmanos program has secured membership in the Multiple Myeloma Research Consortium (MMRC). Silva helped develop a research infrastructure capable of executing nationwide investigator-initiated clinical trials. The Karmanos program is one of the largest in the state of Michigan, and was recently awarded the MMRC Accelerator Award for contributions to MMRC research in 2015. Additionally, KCI has an active amyloidosis research program, with six clinical trials currently encompassing both AL and ATTR amyloidosis therapies.
Silva has organized several educational programs for health care professionals, patients, and caregivers. This includes a well-received CME Satellite Symposium titled Untangling Amyloidosis prior to the 2015 American Society of Hematology (ASH) meeting.
Silva joined the Board of Directors of the Amyloidosis Foundation in 2016.