Neurology Club (SIGN): Life with Amyloidosis
Join us for a special live webinar to hear the raw and unedited story of Bill, one of the patient educators from the Amyloidosis Speakers Bureau.
Bill will share their personal journey with amyloidosis -- from symptoms, through diagnosis, treatment, and life today battling a rare and incurable disease. There will be a live Q&A at the end. Following the presentation, the Amyloidosis Speakers Bureau will send $25 Amazon eCards to four randomly chosen attendees who complete the Feedback Form.
The Feedback Form typically takes 8 minutes or less to complete. It is part of a study to assess the effectiveness of having amyloidosis patients share their symptoms-diagnosis-treatment journey with medical students. Dr. Katherine Rowan at George Mason University is the principal investigator on this study (IRBNET ID #1794232-1). If you click on the link to the form, you will first read a consent form, that is, a brief summary of your rights as a research participant. You then choose to participate or not. Completing the feedback form is entirely voluntary. There are no penalties for choosing not to complete any or all of it.
Amyloidosis is the buildup of a protein called amyloid in the body's tissues or organs. Amyloid isn't normally found in the body, but it can be formed from several different types of protein. Amyloid proteins may affect only a single organ or, often, are spread throughout the body. They can affect different organs in different people, and there are different types of amyloid proteins, making this complex disease often elusive to diagnose. Depending on the type of amyloidosis (AL, ATTR wild-type, hereditary ATTR, etc.), amyloid can deposit in the heart, kidneys, nervous system, spleen, digestive tract, or other organs and soft tissues. Severe amyloidosis can result in life-threatening damage to these organs or even failure.
Amyloidosis is not well known; however, there is a belief within the medical community that this disease is not as rare as once thought. Instead, it is underdiagnosed or diagnosed when it is too late to make a difference. The complexity of this disease makes diagnosis one of the biggest challenges affecting patient lives. It is not uncommon to hear from patients that it took multiple years and multiple doctors to ultimately arrive at a correct diagnosis, all the while the disease continued to progress.
The Amyloidosis Speakers Bureau (ASB) is an initiative focused on educating the next generation of doctors during medical school about this disease through presentations from amyloidosis patients and materials by expert medical advisors. They believe this will translate to a heightened awareness of the disease, arriving at an earlier diagnosis and start of treatment, and in the end, improve patient survivorship. More information about the ASB can be found at www.mm713.org/speakers-bureau/
Disclosure: Neither Mackenzie's Mission nor the Amyloidosis Speakers Bureau endorse any company, product or treatment. Patient educators are unpaid volunteers who may, at their own discretion, mention specific treatments, healthcare centers, and physicians while sharing their personal journey. The Amyloidosis Speakers Bureau is supported predominantly by Mackenzie’s Mission through all facets of program management, fundraising activities and general donations, and to a lesser part by directed donations and grants from Alexion Pharmaceuticals, Alnylam Pharmaceuticals, BridgeBio/Eidos Therapeutics, Ionis Pharmaceuticals, Janssen Biotech, Inc., Pfizer Inc., and Prothena Bioscience Ltd. No donor or grantor has any influence over any facet of the ASB operations.
Contact Faatin for the Zoom link and the Pre-Eevent Survey link.
