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Amyloidosis

All About hATTR Amyloidosis:
Patient Experience and Action
on Testing and Care

Tuesday, January 21, 2020
from 1:30 PM - 3:00 PM ET

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Produced in collaboration with Amyloidosis Support Groups
Support for this patient education program was provided by Alnylam.

Amyloidosis is a rare condition that occurs when an abnormal protein called amyloid builds up in tissue or organs like the heart, kidneys, liver, spleen, nervous system and digestive tract. Severe amyloidosis can be dangerous, and there is no cure – but treatments can help manage symptoms and limit how much amyloid is produced in the body.

Join the first program in this special educational series to hear from doctors, advocates and people living with amyloidosis to learn about:

  • Understand that amyloidosis can be a genetic condition
  • Determine with your doctor whether you or your loved one should seek genetic testing for amyloidosis
  • Communicate with family members the importance of genetic testing if a direct relative has already been diagnosed with the genetic form of amyloidosis
  • Work with a genetic counselor throughout the genetic testing process and locate tools and resources to help manage amyloidosis

Save a virtual seat to attend live or watch on-demand.

Send the panel your questions today.

   

Speakers

Dr. Janice Wiesman, MD

NYU Langone Health

Janice Wiesman, MD, FAAN, is a clinical associate professor of neurology at NYU School of Medicine, attending physician at Bellevue Hospital in New York, New York, and adjunct assistant professor of neurology at Boston University School of Medicine in Boston, Massachusetts. She has been the neurologist for the Boston University Amyloidosis Treatment and Research Center for over 20 years and has participated in clinical trials for Familial Amyloidosis. Dr Wiesman is a speaker for the National Amyloidosis Support Group, a member of the Advocacy Committee of the American Academy of Neurology, and the author of Peripheral Neuropathy: What It Is and What You Can Do to Feel Better, 2016, Johns Hopkins Press.

Dr. Frederick Ruberg, MD

Boston Medical Center

Frederick L. Ruberg, MD, is associate professor of medicine and radiology at Boston University (BU) School of Medicine and clinical cardiologist at Boston Medical Center (BMC) in Boston, Massachusetts. His research focuses on the application of non-invasive cardiac imaging for amyloidosis identification and clinical care optimization. Dr Ruberg serves as senior cardiologist in the BU Amyloidosis Center, associate chief for academic affairs, Section of Cardiovascular Medicine, co-director of the Cardiovascular Medicine Fellowship program, and director of the cardiac MRI program at BMC. He is an associate editor of Circulation: Cardiovascular Imaging and a fellow of the American Heart Association. Dr Ruberg attended the University of Pennsylvania School of Medicine in Philadelphia.

Emily Brown, MGC, CGC

Johns Hopkins Hospital

Emily Brown is a certified genetic counselor in the Center for Inherited Heart Diseases at Johns Hopkins Hospital in Baltimore, Maryland. Her specialty is patients with hereditary transthyretin amyloidosis, and she has participated in multiple research studies and drug trials related to this condition. Emily has a passion for increasing patient and health care knowledge about this condition, which has prompted her to present at multiple national meetings, most recently at the Heart Failure Society of America Scientific Sessions in Philadelphia, Pennsylvania.

Muriel Finkel

Amyloidosis Support Groups

Muriel Finkel, co-founder of Amyloidosis Support Groups (ASG), was a caregiver for her uncle, who had amyloidosis, in the 1990s and early 2000s. Muriel and her husband started ASG in 2004 as a way for patients, caregivers, and those who had lost loved ones to amyloidosis to connect over their experiences. The ASG has grown to more than 50 meetings a year in 30 cities as well as into a passion for Muriel. The ASG has touched the lives of more than 5,000 amyloidosis patients and loved ones in the United States and Canada through face-to-face meetings and Facebook support groups. The ASG, at the request of several amyloidosis physicians, has recently started a patient registry to help researchers and patients find out more about their disease.

Sean Riley

Patient

Sean Riley, adjunct professor of Nuclear Engineering Technology, resides in Boston, Massachusetts. He began experiencing disease symptoms of numbness in his left shin and foot several years ago. Over the next three years, Sean lost approximately 80 pounds of weight and started experiencing symptoms of lightheadedness. After moving to Abu Dhabi and experiencing a fainting episode, a cardiologist advised him to return to the United States for treatment. Sean’s condition, hereditary amyloidosis, was confirmed at Brigham and Women’s Hospital in February 2019, and his treatment commenced in May. The progression of his disease appears to be halted. Sean wants to help educate the medical community so future patients can be diagnosed and treated at a much earlier stage of disease progression.

RESOURCES

 

Partners

  • Amyloidosis Support
  • Amyloidosis Foundation
  • Amyloidosis Research Consortium