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 15 years. Don’s widow, Mary O’Donnell, has 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.
- Empowering patients through our comprehensive range of services, including accurate up to date information.
By phone, email or mail, contact us today. We are here to help.
7151 N. Main St., Suite 2
Clarkston, MI 48346
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 – Boston
Lawreen Connors, PhD
Allan and Sandra Gerry Amyloid Research Laboratory – Boston University
Rodney H. Falk, MD
Brigham and Women’s Hospital – Boston
Morie Gertz, MD
Mayo Clinic – Rochester, MN
Mathew Maurer, MD
Columbia University Medical Center, NY
Giampaolo Merlini, MD
University of Pavia, Italy
Vaishali Sanchorawala, MD
Boston University School of Medicine – Amyloid Center
Douglas Sawyer, MD, PhD
Maine Medical Center
Jonathan Wall, PhD
University of Tennessee – Knoxville
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.
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.
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.
Daniel J. Lenihan, MD, FACC
Daniel Lenihan, M.D., FACC joined the Washington University in St. Louis Department of Medicine in 2017 as a Professor in the Cardiovascular Division and Director of the Cardio-Oncology Center of Excellence. He previously directed the Clinical Research Enterprise in Cardiology at Vanderbilt University for 8 years. He is intimately involved in the latest treatment trials for cardiac amyloidosis.
Dr. Lenihan has been active in cardio-oncology and heart failure for nearly 20 years. The main focus of these efforts have included hemodynamic assessments, angiogenic growth factor response, novel cardiac biomarkers as well as optimal methods to prevent or detect heart failure at the earliest stage possible in patients undergoing treatment for cancer. Dr. Lenihan is at the forefront of concerted efforts to develop a viable Cardio-Oncology fellowship training program and continues to foster collaboration among a host of colleagues regionally, nationally, and throughout the world. He is the current president of the International Cardio-Oncology Society (ICOS), a professional association whose primary goal is to eliminate cardiac disease as a barrier to effective cancer therapy.
Dr. Lenihan joined the Board of Directors of the Amyloidosis Foundation in 2018.
Adrienne Molteni, RN
Adrienne is currently a Registered Nurse at Vanderbilt University Medical Center located in Nashville, TN and works in the Infusion Center. She has been an RN for 25 years, primarily in Medical Oncology and has a personal business as a Certified Legal Nurse Consultant.
Her hobbies include horseback riding, traveling, scuba diving, hiking, playing tennis and golf. Adrienne is a Team Lead for an animal rescue/disaster response team in TN, the Wilson County Disaster Animal Response Team. She has three sons and two grandchildren.
Adrienne joined the Board of Directors of the Amyloidosis Foundation in 2018.
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.
Mark Sutherland is a Financial Advisor/ CFP, CRPC with LPL Financial in Southfield, Michigan. He helps his clients identify and plan all aspects of their financial needs – including investments, retirement planning, insurance, and taxes.
Mark attended Michigan State University, where he graduated with a B.A. in Business Administration in 1979.
On campus, he played varsity baseball and helped lead his team to a Big Ten Championship his senior year. He was also an active member of the Psi Upsilon Fraternity.
In 1983 he joined E.F Hutton and earned his securities license. Over the following 34 years of his career, he continued to expand his education by earning his Certified Financial Planner (CFP) designation in 1997 and Chartered Retirement Planning Counselor (CRPC) in 2013.
Mark has supported the Amyloidosis Foundation for many years, attending our annual golf outing events. He began working with AF President Mary O’Donnell and Treasurer Dante Burchi regarding investment recommendations for the foundation since 2015 and became a member of the Board of Directors in 2017.
Mark and his wife Carol have three children and enjoy family outings, golf, volunteering, and following MSU sports.
Darcy B. Tannehill, Ed.D.
It is with regret that we have lost our good friend Darcy Tannehill, who passed away on Saturday, April 21, 2018 after courageously and passionately battling amyloidosis.
Dr. Tannehill spent the majority of her career in higher education working in academic affairs, student affairs, enrollment management, international admissions, and campus management. She held a number of academic and administrative positions in both Pittsburgh and Chicago, including Campus President and Vice President of Online and Off-Campus Programs.
She was an Associate Professor of Education at Robert Morris University in Pittsburgh, PA. She had served as a manuscript editor and a research journal reviewer. Her undergraduate degree in psychology and sociology and her master’s degree in education are from Duquesne University. Her doctorate in administrative and policy studies—higher education management was from the University of Pittsburgh.
Darcy was diagnosed with light chain amyloidosis in May of 2012, undergoing multiple rounds of chemotherapy and a stem cell transplant. Darcy’s husband died in 2009 but her daughter, son-in-law, and granddaughter live less than a mile away and provided wonderful family support. Her hobbies included Shetland sheepdog rescue, playing the piano, and researching online learning, adult learning, leadership, student support services, and, of course, amyloidosis.
She served as the chair of the annual Pittsburgh Amyloidosis Research Benefit (which began in 2016) and her daughter Courtney Sullivan will continue this event in her memory on Friday, October 26, 2018.
Darcy became a member of the Board of Directors of the Amyloidosis Foundation in 2017.
The Amyloidosis Foundation began in 2003 as a small idea to support patients, which has grown into an international resource – celebrating our 15th anniversary in 2018.
Our 2017 Annual Report gives details on our finances, research grant program, fundraising events, donors and more.
See how we are making a remarkable difference in the amyloidosis community for patients, researchers, physicians and more. We look forward to the next few years with hope for a cure. Click below to load each report.