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.

REGISTER HERE

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.

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

The Amyloidosis Foundation is proud to be a partner at this event, Amyloidosis: A Disease Now at the Forefront of Practice Latest Diagnostic & Treatment Strategies on February 22, 2020 at Washington University in St. Louis, MO, chaired by our Board of Director, Daniel Lenihan, MD.  This is a symposium for providers, patients and their families. Continuing Medical Education (CME) credits will be available.

Patients touched by amyloidosis and their families are invited to attend the lunch and afternoon session. The breakout sessions will allow attendees the opportunity to ask questions of various medical providers and network.

Guest faculty includes:

Raymond L. Comenzo, MD
Professor of Medicine
Tufts University School of Medicine
Director, John C Davis Myeloma and Amyloid Program
Tufts Medical Center, Boston, Massachusetts

Mathew S. Maurer, MD
Arnold and Arlene Goldstein Professor of Cardiology
Professor of Medicine
Columbia University Irving Medical Center
Director, Cardiac Amyloidosis Program, New York, New York

This course is planned and designed inter-professionally by and for physicians and nurses. This live activity is designed for cardiologist, neurologist, gastroenterologist, oncologist, hematologist, nephrologist, hospitalists, internists, general medicine physicians, physician assistants, nurse practitioners, and nurses, as well as patients and their family.

The intended result of this activity is increased knowledge, competence, performance and skill and enhanced patient care. At the completion of the activity registrants should be able to:

• State the etiology and epidemiology of both TTR and AL amyloidosis
• Select appropriate diagnostic approach in amyloidosis
• Differentiate AL vs TTR in diagnosis of amyloidosis
• Outline current therapeutic options
• Describe current research developments in AL and TTR

For more information click here

Patients and families register here

Brandpoint (BPT) – Posted: Wednesday, December 11, 2019 4:31 am

(BPT) – A disease called hereditary ATTR amyloidosis (hATTR) is linked to a genetic mutation that has been passed through generations of Americans with ancestors from West African countries such as Ghana, Sierra Leone, Cote d’Ivoire, and Nigeria. hATTR amyloidosis is difficult to diagnose and often missed by doctors and patients because its symptoms and related complications, which include numbness, tingling or loss of sensation in the hands and feet, dizziness, and fainting, are similar to those of common conditions such as diabetes and hypertension (high blood pressure). But unlike these conditions, which are frequently recognized and can be managed through a combination of lifestyle factors and a variety of available medicines, hATTR amyloidosis is a complex, multi­-system disease that worsens over time if not addressed. Today, accurate genetic tests that diagnose hATTR amyloidosis are readily available, so early action is important.

 Click here to read the full article.

The Amyloidosis Foundation is thankful for the amazing generosity from our friends and donors on #GivingTuesday. You helped us surpass our goal of raising $20,000 in 24 hours by soaring past that with close to $30,000 in online donations and Facebook fundraisers.

Over the past 16 years, the Amyloidosis Foundation has been privileged to provide over $1.97 million to medical research for the disease and to support dozens of young investigators who have presented their work at international meetings. We are so very thankful to our donors, to the patients and families and corporate sponsors who have made this effort possible and to our staff, board members and advisors who have led us in these endeavors.

If you would still like to donate, use our online link here.

The ABCs of Amyloidosis: The Journey From Diagnosis to Treatment

This article is for people who have amyloidosis, or anyone who wants to learn more about this disease. The goal of this patient education activity is to inform you about amyloidosis, so that you can take a proactive role in your treatment and care.

Click here to be directed to this patient education activity.