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.
  • 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.

Phone

1-877-AMYLOID (877-269-5643)

Email

info@amyloidosis.org

Mailing Address

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

Contact Us

 

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

The Amyloidosis Foundation

Our History

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Dennis Krysmalski

Founder

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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

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

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.

Uria Espinoza-Leopold

Secretary

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 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.

Isabelle Lousada

Director

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.

 

Giampaolo Merlini, MD

Director

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

Director

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 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.

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.

Board of Directors
The Stories

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The Resources

Toolkits, webinars and support materials

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The News

The latest foundation news and developments

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Apr 17

2017 Boston Marathon, Supporting Amyloidosis

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May 07

2017 Pittsburgh Half Marathon

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May 13

Annual AF Golf Outing

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May 21

Half Ironman in Chattanooga, TN

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