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

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The Amyloidosis Foundation is excited to offer an easy way to raise money for our organization.

Experience the right way to fund raise

Gift card fundraising is the best way to raise money for our organization. Buy gift cards from your favorite brands to earn on your daily purchases. It’s never been easier to create opportunities for what matters most to you. No extra money spent. No extra time wasted. 

How it works:

Raise money by purchasing gift cards at face value

Shop 750+ top brands and immediately earn up to 20% on every gift card you buy. You can easily raise $1,000 or more every year.

Use gift cards at full value for your daily purchases

Earnings come from brands, not from your pocket, so gift cards are worth every penny. Raise money simply by doing everyday things—like grabbing your morning coffee or ordering dinner for the family.

How to get started

Create an account on the RaiseRight app or at ShopWithScrip.com using our organization’s enrollment code.

What is the enrollment code? This code is the Foundation’s unique identifier. Please contact our office at 248-922-9610 or info@amyloidosis.org to request the enrollment code.

Seamlessly check out and receive eGift cards faster by securely paying online with a linked bank account or credit card.

For more detailed information on how to order gift cards for the foundation, click here.

Have additional questions? Contact Nancy at info@amyloidosis.org or 248-922-9610.

Read our latest newsletter here.

Watch Martha Grogan, M.D., Director of Cardiac Amyloid Clinic at Mayo Clinic in Rochester, MN speak on the newest treatments in Cardiac Amyloidosis.

Watch HERE.

WHAT IS A VIRTUAL RACE?

A virtual race is a race that can be run (or walked) 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 Race

Registration for the Virtual Race will begin on May 25, 2020. You can choose 5K – $35.00 or 10K – $45.00. Don’t forget to share the race with your friends and family.

Registration is now closed

Or call the office to register at 248-922-9610

Once you have signed up for the race, 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 race with you too. The race should be completed between May 25, 2020 and July 6, 2020.

Complete Your Virtual Race

Submit Your Results

Once you have completed your race, you will email your info and photos to info@amyloidosis.org.

Check out the Leaderboards HERE!

Take Photos and Share Your Race with Us

We would love to hear about your race! Join our Amyloidosis Facebook page and Instagram page. #AFVirtualRun #AFVirtualRun2020 #VirtualRun2020 #RunforyourLife2020

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is a non-profit support and information organization for individuals with Waldenstrom’s macroglobulinemia (WM.) IWMF publishes a quarterly magazine with information about symptoms and treatments, stories of interest, articles about living with the disease and patient education.  Comprised of more than 10,000 members, the organization offers a telephone and email service, a network of support groups around the world, and an online discussion forum.   IWMF holds an annual Educational Forum for patients and supports a robust research program to fund projects aimed to better understand the disease.  

The next Educational Forum will be held in Seattle, WA from June 24 – 26, 2022.  

For more information about IWMF, click here.

Spring is here! Catch up on all the latest news and information from the Amyloidosis Foundation in our newsletter.

Click here to read.

Most people are unfamiliar with amyloidosis, often diagnosed late since they are unaware of what this rare disease is or what symptoms to look for. The Amyloidosis Foundation is working to change that, declaring March as Amyloidosis Awareness Month.

We began in 2018, by passing state resolutions to recognize Amyloidosis Awareness Month in Tennessee, Michigan and Louisiana. Indiana passed a resolution in January 2019, followed by Florida. We have advocates working on similar legislation in the following states for 2020: Alabama, Arkansas, California, Florida, Georgia, Kentucky, Massachusetts, North Carolina, New York, Ohio, Oregon, Pennsylvania, Texas, Utah, Virginia, Washington and Wisconsin.

The AF is encouraging patients, caregivers, physicians and donors to participate this March by using the hashtag #amyloidosisawareness on all social media platforms. By spreading amyloidosis awareness online, this will increase the chances that others will be diagnosed and treated earlier, which is an important part to creating positive outcomes for all patients.

In 2020, “Light the night for amyloidosis” is an awareness campaign created to draw attention to amyloidosis symptoms, diagnosis, treatment and hopefully a cure! We thought this campaign would go perfectly with Amyloidosis Awareness Month. We are asking everyone to light up their porch/entryway with red bulbs for the month of March. Bulbs can be purchased on our website at: http://amyloidosis.org/products/

We are also asking some landmarks and businesses across the world to do the same in March. The current list of those lighting up for amyloidosis can be found at:  http://amyloidosis.org/light-the-night-for-amyloidosis-awareness-campaign/. We ask that if you are close to one of these lightings, that you take a picture and post to social media with the hashtags #LightTheNightForAmyloidosis #LTNFA #AmyloidosisAwareness and don’t forget to tag the Amyloidosis Foundation or send the picture to kathi@amyloidosis.org.

We are thankful that in the Summer of 2018, two therapies were approved by the FDA for ATTR amyloidosis, which is the hereditary type of this disease. There was another therapy that was approved in 2019. For more information about Amyloidosis Awareness Month, “Light The Night For Amyloidosis” or if you’d like to become an advocate, email kathi@amyloidosis.org.

Read our latest newsletter here