2022 Spring Newsletter

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7151 N. Main St. Ste. 2 Clarkston, MI 48346
Supporting amyloidosis patients and families while promoting research, education and awareness. (248) 922-9610
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A virtual run is a run that can be run (walked or rolled) from any location you choose. You can run, jog, walk or bike on the road, on the trail, on the treadmill, at the gym, or on the track. You get to run your own race, at your own pace, and time it yourself.
Registration for the Virtual Run is currently open.
Or call the office to register at 248-922-9610.
Once you have signed up for the run, either a 5K or 10K, then decide on the course you want to do, or you can do it on the treadmill. You time yourself. You can even get your friends and/or your kids to run with you too. The run should be completed between May 1, 2022, and July 31, 2022.
Don’t forget to share the run with your friends and family!
Once you have completed your run, send us some photos to share with kathi@amyloidosis.org.
We would love to hear about your run! Join our Amyloidosis Facebook page and Instagram page. #AFVirtualRun #AFVirtualRun2022 #VirtualRun2022
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“Light the Night for Amyloidosis” is an awareness campaign created to draw attention to amyloidosis symptoms, diagnosis, treatment, and hopefully a cure! Since ‘Amyloidosis Awareness Month’ occurs in March, we are asking everyone to light up their porch/entryway with red bulbs for the month of March.
We have also contacted many US landmarks and businesses to do the same in March 2022. Below is a list of the approved requests, along with the date the lighting will occur.
We have red light bulbs available for purchase here! Please join us in our “Light the Night for Amyloidosis” awareness campaign.
We are pleased to announce the funding of three new Junior Investigator Research Grants for 2022. The Amyloidosis Foundation Research Grants have been awarded to the following applicants:
K. H. Vincent Lau, MD of Boston University, Boston, MA. His research is titled “Evaluating Plasma Neurofilament Light Chain as an Early Biomarker for Polyneuropathy in V122I Hereditary Transthyretin Amyloidosis”.
Zainul S. Hasanali, MD, PhD of University of Pennsylvania, PA. His study is “Targeting amyloidosis through study of calcium dependent endoplasmic reticulum resident protein folding chaperones and their effect on antibody production in plasma cells”.
Taxiarchis Kourelis, MD of Mayo Clinic, Rochester, MN. His research is titled “Characterizing the role of the tissue immunome in the pathogenesis of renal AL amyloidosis”.
The Amyloidosis Foundation has awarded over $2 million to research since the inception of the grant program in 2005.
Click here for photos and to read more about their proposals.
Congratulations!
On November 30, 2021, people all around the world are coming together to tap into the power of human connection and strengthen communities and change our world. Will you be one of them?
Amyloidosis Foundation will be participating in GivingTuesday and we need your help!
By joining the GivingTuesday movement, you’re proving that in times of uncertainty, generosity can bring the whole world together.
Here is how you can get ready to give:
Let’s rally together to build stronger communities.
The Amyloidosis Foundation is a non-profit organization that supports research through our annual grant program. Our mission is to raise awareness of the disease within the medical community and the public, in addition to providing education, information, and support for patients and their families.
In 2020, we raised over $15,000. This year our goal is $20,000 and we need your help!
Those who are interested in joining Amyloidosis Foundation’s #GivingTuesday initiative can click here.
Together we give. Share your #UNSELFIE. Use our template and share it on Facebook, Instagram, and Twitter.
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Listen to our latest webinar that was recorded on September 14, 2021. Presented by Heather Landau, MD who is a hematologist-oncologist and the Director of the Amyloid Program at Memorial Sloan Kettering (MSK) Cancer Center focused on increasing access to novel, effective therapies in AL amyloidosis and has investigated drugs at all stages of development. She has conducted multiple investigator-initiated clinical trials exploring novel agents and approaches, including consolidation and maintenance strategies in high-risk patients. She led the development of MSK’s Outpatient Transplant Service and is studying innovative ways to optimize high-dose therapy and transplant care.
Please join us for our webinar event presented by Dr. Heather Landau.
Heather Landau, MD, is a hematologist-oncologist and the Director of the Amyloid Program at Memorial Sloan Kettering (MSK) Cancer Center focused on increasing access to novel, effective therapies in AL amyloidosis and has investigated drugs at all stages of development. She has conducted multiple investigator-initiated clinical trials exploring novel agents and approaches, including consolidation and maintenance strategies in high-risk patients. She led the development of MSK’s Outpatient Transplant Service and is studying innovative ways to optimize high-dose therapy and transplant care. Pharmacokinetically dosed conditioning has the potential to truly personalize high-dose therapy and Dr. Landau has shown that delivering transplant care at home is safe and improves the quality of life and satisfaction of patients and caregivers. As an active member of the Amyloid Research Consortium (ARC), Dr. Landau has worked with the FDA to identify scientifically rigorous but feasible clinical trials designs and incorporate clinically meaningful endpoints to accelerate drug approval in this disease. Translational research efforts focus on using genomic approaches to understand the biology of pathologic plasma cells in AL amyloidosis, including their sensitivity and resistance to therapies. Partnering with colleagues in pathology and clinical laboratory medicine, Dr. Landau is developing more sensitive methods of detecting and monitoring monoclonal disease using mass spectrometry. As a member of the International Society of Amyloidosis, she has contributed to recently developed clinical guidelines that highlight best practices for hematopoietic cell transplantation. She is a member of the International Myeloma Society and International Kidney Monoclonal Gammopathy Working Group. Dr. Landau’s expertise in the field of amyloidosis leads to frequent invitations to lecture nationally and internationally. She also participates regularly in patient-centered initiatives through the Amyloidosis Research Consortium, Amyloid Foundation, Patient Support Groups and serves as an advisor to Mackenzie’s Mission.