Listen to this informative webinar that was recorded on May 26, 2021on the Emerging treatment landscape for Cardiac Amyloidosis. The webinar was hosted by Mathew S. Maurer, MD a general internist and geriatric cardiologist with advanced training in heart failure and cardiac transplantation.  He is the Arnold and Arlene Goldstein Professor of Cardiology at Columbia University Irving Medical Center, Vagelos College of Physicians & Surgeons, where directs the Clinical Cardiovascular Research Laboratory for the Elderly (CCRLE). Dr. Maurer is a member of the Advanced Cardiac Care Center at New York Presbyterian Hospital – Columbia Campus. 

After the presentation, Dr. Maurer answered many interesting questions from patients, physicians and family members.

Please share this link with your family and friends to spread amyloidosis awareness.

LISTEN HERE

Live Webinar Event

Emerging treatment landscape for Cardiac Amyloidosis

Dr. Mathew S. Maurer, MD

Dr. Maurer is a general internist and geriatric cardiologist with advanced training in heart failure and cardiac transplantation.  He is the Arnold and Arlene Goldstein Professor of Cardiology at Columbia University Irving Medical Center, Vagelos College of Physicians & Surgeons, where directs the Clinical Cardiovascular Research Laboratory for the Elderly (CCRLE). Dr. Maurer is a member of the Advanced Cardiac Care Center at New York-Presbyterian Hospital – Columbia Campus

• When: May 26, 2021
• Time: 3:00 pm EDT

View Webinar Here

WHAT IS A VIRTUAL RUN?

A virtual run is a run that can be run (walked or rolled) from any location you choose. You can run, jog, or walk 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. 

Sign Up for the “Run for Your Life” Virtual Run

Registration for the Virtual Run is currently open.

• 5K Run – $25.00
• 10K Run – $35.00

Register Here

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, 2021, and July 31, 2021.

Don’t forget to share the run with your friends and family!

Take Photos and Share Your Run with Us

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 #AFVirtualRun2021 #VirtualRun2021 #RunforyourLife2021

CAMBRIDGE, Mass., March 30, 2021 (GLOBE NEWSWIRE) — Intellia Therapeutics, Inc. announced today that the European Commission (EC) has granted orphan drug designation to NTLA-2001. This investigational medicinal product is being developed as a treatment for transthyretin amyloidosis (ATTR).

Read full article here.

By BIOENGINEER – March 16, 2021

Memphis, Tenn. (March 16, 2021) – The National Institute of Diabetes and Digestive and Kidney Diseases recently awarded Jonathan Wall, PhD, professor in the University of Tennessee Health Science Center’s Graduate School of Medicine in Knoxville, a $1.79 million grant for his study titled “Developing a Theranostic Immunotherapy for Systemic Amyloidosis.”

Read the full article here.

We are pleased to announce the funding of two new research projects for 2021. The Donald C. Brockman Memorial Research Grant has been awarded to Maria Moscvin, MD of Brigham and Women’s Hospital in Boston, MA. Her study is targeting Free Light Chain Secretion as a Novel Therapeutic Strategy in AL Amyloidosis. The David Seldin, MD, PhD Memorial Junior Research Grant recipient is Timothy Poterucha, MD of Milstein Hospital, Columbia University, New York, NY. His study will focus on the Prospective identification of transthyretin cardiac amyloidosis using deep learning.

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!

“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 2021. Below is a list of the approved requests, along with the date the lighting will occur.

View our growing list here.

We have red light bulbs available for purchase here!  Please join us in our “Light the Night for Amyloidosis” awareness campaign.

‘Light The Night for Amyloidosis’ campaign in March 2020 was a great success! The Amyloidosis Foundation had great participation, with over 100 sites in 5 countries lighting for our cause.

We are planning for the March 2021 event. “Light the Night for Amyloidosis” is an awareness campaign created by the Amyloidosis Foundation to draw attention to amyloidosis symptoms, diagnosis, treatment, and hopefully a cure! ‘Amyloidosis Awareness Month’ occurs in March.

Some of those that lit up for amyloidosis are Niagara Falls, Aloha Tower, LAX Airport, Little Caesar’s Arena, JL Tower, Zakim Bridge, Wells Fargo’s Duke Energy Center, Detroit Ford Field, MLK Jr Memorial Bridge, Bank of America Plaza, The PA Capitol Building, Emirates Spinnaker Tower, Calgary Tower, and many other notable locations. You can view the full list at: 

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. The Amyloidosis Foundation is a worldwide foundation. AMYLOIDOSIS represents several different types of diseases where an abnormal protein called amyloid is produced. These amyloid protein fibers can attach and deposit into organs, tissues, nerves, and other places in the body. When that happens, health problems, organ damage, or organ failure may occur. http://www.amyloidosis.org.

For questions, please contact kathi@amyloidosis.org.

The Amyloidosis Foundation has again joined #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities, and organizations to encourage philanthropy and to celebrate generosity worldwide. Occurring this year on December 1, #GivingTuesday is held annually on the Tuesday after Thanksgiving (in the U.S.) and the widely recognized shopping events Black Friday and Cyber Monday to kick-off the holiday giving season and inspire people to collaborate in improving their local communities and to give back in impactful ways to the charities and causes they support.

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 2019, #GivingTuesday campaigns brought in over $1.9 billion in donations, with almost $30,000 of those dollars going to the Amyloidosis Foundation. 

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.

Oct 19, 2020

NTLA-2001: First single-course therapy that potentially halts and reverses ATTR

On track to dose first patient by year-end with a systemically delivered CRISPR/Cas9-based therapy

CAMBRIDGE, Mass., Oct. 19, 2020 (GLOBE NEWSWIRE) — Intellia Therapeutics, Inc. (NASDAQ:NTLA), announced the authorization of its Clinical Trial Application (CTA) by the United Kingdom Medicines and Healthcare products Regulatory Agency (MHRA) to initiate its Phase 1 study, which will evaluate NTLA-2001 for the treatment of hereditary transthyretin amyloidosis with polyneuropathy (hATTR-PN).

Read more here