Us

Meet the team

Supporting patients and families while promoting research, education and awareness.

Us

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.
  • 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.

 

Phone

1-877-AMYLOID (877-269-5643)

Email

info@amyloidosis.org

Mailing Address

Amyloidosis Foundation
7151 N. Main St., Suite 2
Clarkston, MI  48346

The Amyloidosis Foundation is a non-profit 501(c)(3) corporation.

The Amyloidosis Foundation

Our History

Apple
Dennis Krysmalski

Founder

Apple
Don Brockman

Founder

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.

Our History

Scientific Advisors

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, NY

Giampaolo Merlini, MD
University of Pavia, Italy

Vaishali Sanchorawala, MD
Boston Medical University –  Amyloid Treatment Center

Douglas Sawyer, MD, PhD
Maine Medical Center

Jonathan Wall, PhD
University of Tennessee

Scientific Advisors

Board of Directors

Meet our Leadership

Mary O'Donnell

President

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 Burchi

Treasurer

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 Haffner

Director

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 Heath

Director

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.

Sheryl Kernodle, RN

Director

Sheryl Kernodle has called Vanderbilt Medical Center home for the last seven years, where she has worked as a Cardiac nurse in the Cardio-Oncology, Advanced Heart Failure/Amyloidosis clinic at the Vanderbilt Heart and Vascular Institute in Nashville, TN. She received her nursing degree in 1993 from Aquinas Junior College in Nashville and has over 24 years of experience, with the last 17 focusing on Cardiac sub-specialties.

In 2014, Sheryl was given the opportunity to work with Daniel Lenihan, MD at Vanderbilt as his clinic nurse. Dr. Lenihan (who transferred to Washington University School of Medicine in St. Louis, MO in August 2017) was one of the Cardiologists at VHVI that specialized in the care of patients with amyloidosis. She had never heard of amyloidosis prior to coming to Vanderbilt and was very interested in learning all she could about this rare disease. Dr. Lenihan provided the resource tools needed to become knowledgeable as well as developing the nursing skills needed to care for amyloidosis patients.

Sheryl is currently working on a resource manual for the nursing staff at Vanderbilt, as well as being a representative for Cardio-Oncology in the VHVI Unit Board Charter, where staff members meet monthly to collaboratively make decisions that can improve patient care, clinical practice and enhancement of professional opportunities. She attended the American Association of Nurse Practitioners Conference (AANP) in June 2017 as a volunteer for the Amyloidosis Foundation and looks forward to attending more conferences in the future.

Sheryl joined the Board of Directors of the Amyloidosis Foundation in 2017. She is married and enjoys cooking, gardening and her favorite exercise is walking.

Silva Pregja

Director

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

Director

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.

Director

Dr. Tannehill has spent the majority of her career in higher education working in academic affairs, student affairs, enrollment management, international admissions, and campus management. She has 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 is currently an Associate Professor of Education at Robert Morris University in Pittsburgh, PA. She has 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 is 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. While it took more than six years and visits to eight specialists to get a diagnosis, she is fortunate in that she has no major organ damage. Darcy’s husband died in 2009 but her daughter, son-in-law, and granddaughter live less than a mile away and provide wonderful family support. Her hobbies include 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 Pittsburgh Amyloidosis Research Benefit in 2016. Its success warrants it to become an annual event—the next one scheduled already for October 27, 2017.

Darcy joined the Board of Directors of the Amyloidosis Foundation in 2017.

Board of Directors

Annual Report

Cover

The Amyloidosis Foundation 2016 Annual Report is complete. We are committed to supporting patients and families while promoting research, education and awareness.

Our report gives details on our finances, research grant program, fundraising events, donors and more.

With your help, we will continue to be on a mission for a cure.

Click here to download the report.

Annual Report
The Stories

Hear it first hand from the AF community

more
The Resources

Toolkits, webinars and support materials

more
The News

The latest foundation news and developments

more

Oct 21

"Run for Your Life!" 5k/10k

Clarkston, MI

More
Oct 21

Penny's Ride for the Cure

Ashland City, TN

More
Oct 27

2017 Pittsburgh Research Benefit

Montour Heights Country Club

More
Nov 11

Hills and Hollers Half Marathon & 5K

Thompson's Station, TN

More