2021 “Light the Night for Amyloidosis”

2021 “Light the Night for Amyloidosis”

‘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.


2020 Giving Tuesday

2020 Giving Tuesday

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.


Intellia Therapeutics Receives Authorization to Initiate Phase 1 Clinical Trial of NTLA-2001 for Transthyretin Amyloidosis (ATTR)

Intellia Therapeutics Receives Authorization to Initiate Phase 1 Clinical Trial of NTLA-2001 for Transthyretin Amyloidosis (ATTR)

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



Shop with Gift cards while donating to Amyloidosis Foundation

Shop with Gift cards while donating to Amyloidosis Foundation

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.




“Run for your Life” Virtual Race

“Run for your Life” Virtual Race

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


International Waldenstrom’s Macroglobulinemia Foundation (IWMF) Educational Forum

International Waldenstrom’s Macroglobulinemia Foundation (IWMF) Educational Forum

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.


2020 Spring Newsletter

2020 Spring Newsletter

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

Click here to read.