Untangling Amyloidosis – Webinar

Untangling Amyloidosis – Webinar

The Amyloidosis Foundation hosted a webinar on June 1, presented by Vaishali Sanchorawala, MD, a hematologist and Director of the Boston University/Boston Medical Center Amyloidosis Center, and Frederick L. Ruberg, MD, the senior cardiologist with the center.

Following the presentation, the physicians answered many questions from patients and caregivers.

To listen to this webinar, please click here.

This program was supported by an independent grant from Alnylam.


Pfizer Receives FDA Fast Track Designation for Tafamidis for Transthyretin Cardiomyopathy

Pfizer Receives FDA Fast Track Designation for Tafamidis for Transthyretin Cardiomyopathy

Pfizer Inc. announced today that the FDA granted Fast Track designation to tafamidis, the company’s investigational treatment for transthyretin cardiomyopathy (TTR-CM). This rare disease is associated with progressive heart failure. Currently in Phase 3 clinical development for TTR-CM, tafamidis is being evaluated for its potential to reduce mortality and cardiovascular-related hospitalizations.

The FDA’s Fast Track approach is a process designed to facilitate the development and expedite the review of new drugs and vaccines intended to offer real hope for treatment options for people living with rare diseases.

Pfizer’s ATTR-ACT: Transthyretin Amyloid Cardiomyopathy Tafamidis Study is the first Phase 3 clinical study initiated in TTR-CM and includes both patients with variant transthyretin familial amyloid cardiomyopathy (TTR-FAC), which is the hereditary form of the disease, and those with wild-type TTR-CM, which is not hereditary and may occur as people age. The ATTR-ACT study is fully enrolled and is anticipated to be completed in the first half of 2018.

More information here:


“Run for Your Life!” – Walk/Run

“Run for Your Life!” – Walk/Run

We cordially invite you to participate in the Amyloidosis Foundation Run for Your Life! 5k/10k Walk/Run. This event will raise money to provide medical research and will help fund programs that benefit amyloidosis patients and their families.

The event will be held Saturday, October 21, 2017 at Independence Oaks County Park in Clarkston, MI. The 10k will kick off at 9:30 a.m. followed by the 5k at 9:45 a.m. Awards will be given for top qualifiers as well as best costume. Race includes food and drink at the finish line plus Chronotrack timing by Newton Timing & Race Services Company.

Register early for lowest prices and receive:

  • Run for Your Life! Long sleeve tech shirt
  • Finisher’s medal

Race Information Links Below:

 

**To volunteer at this event, please complete the form below**

Contact Us


Amyloidosis Symposium in Utah

Amyloidosis Symposium in Utah

The Amyloidosis Foundation is proud to sponsor the “Amyloidosis Symposium – A Multidisciplinary Approach for Success” on Friday, June 9, 2017 at the University of Utah, in cooperation with the Huntsman Cancer Institute. The event will be held from 12pm – 5pm in the Health Sciences Education Building (room 1750).

The keynote speakers will be Raymond Comenzo, MD from Tufts University in Boston, MA and Daniel Lenihan, MD from Vanderbilt University in Nashville, TN. There will also be a patient panel lead by patient and Amyloidosis Foundation board member, Charlotte Haffner.

CME’s will be provided for physicians.

Contact

Registration is complimentary. Please RSVP to sean.hepner@hci.utah.edu or call 801/213-2082.


2017 Amyloidosis Foundation Golf Outing

2017 Amyloidosis Foundation Golf Outing

Our annual golf outing at the The Fountains in Clarkston, MI on May 13, 2017 was amazing – great weather, wonderful friends and family to support the Amyloidosis Foundation plus many prizes to win!

We had over 60 people attend the event and raised just over $8,000. A donation to the DMC Children’s Hospital will be made to purchase toys and games for those young patients.

Thank you to our sponsors (including Prothena), volunteers and most of all the golfers for your support – see you next year!

 

 


VITAL Amyloidosis Study Update

VITAL Amyloidosis Study Update

Per Prothena, following on the heels of completing enrollment in the NEOD001 Phase 2b PRONTO study in March, we are excited to let you know that today they completed enrollment in the Phase 3 VITAL Amyloidosis Study.

With enrollment in this pivotal study now complete (260 patients), Prothena is looking forward to the results which, if positive, will enable them to submit the regulatory package for approval of NEOD001.

More details On NEOD001 here: http://bit.ly/2rLazcz.


Emily Martin – Research Grant Recipient

Emily Martin – Research Grant Recipient

The University of Tennessee Graduate School of Medicine, located in Knoxville, TN, recently featured Emily Martin, PhD and her 2017 junior research grant award from the Amyloidosis Foundation on their website.

Emily is also an Assistant Professor at UTGSM and has been studying amyloidosis for almost 10 years. Read more about her grant here.


Melanie Gretzinger Memorial Half Ironman Triathlon

Melanie Gretzinger Memorial Half Ironman Triathlon

Alicia Conrad will be participating in her first Half Ironman Triathlon on May 21 in Chattanooga, TN.  For those unfamiliar with a Half Ironman race, it consists of a 1.2 mile swim, a 56 mile bike ride and a 13.1 mile run. She will be running in memory of Melanie Gretzinger, who died at the age of 53 from complications related to amyloidosis.  This disease took the life of a young, vibrant woman, who is missed very much.

To honor Melanie’s memory and spirit, Alicia will be using this opportunity to raise money for the Amyloidosis Foundation.

Click here to donate.

Thank you for your support!

 

Melanie Gretzinger

Melanie Gretzinger

Bobby Black 5k for Amyloidosis Research

Bobby Black 5k for Amyloidosis Research

Bobby Black will forever be loved by his community. After his amyloidosis diagnosis, against all odds, he was blessed to have 8 additional years to shine, to smile, to make a difference. On Saturday, June 17, 2017 at Conestee Park in Greenville, SC we will honor his memory with a 5k race, with all funds donated to the Amyloidosis Foundation. Details here.

Here is a short video to see what an amazing teacher he was.

To honor his legacy, his friends and family want to give back by hosting this event to support amyloidosis research for a cure. Please help raise money for the Amyloidosis Foundation and help us, help others. Thank you for your support.

Registration or Donation link here.


Mill Creek Brewing Fundraiser

Mill Creek Brewing Fundraiser

On Thursday, May 18 please join us for a fundraiser benefitting the Amyloidosis Foundation near Nashville, TN –  $1 from every pint will be donated to the foundation alongside the proceeds from a silent auction. The event will begin at 6pm until 9pm.

Mill Creek Brewing Company will be hosting this event with members of the Nolensville, TN community. Patrick (a member of the Nashville Rugby Football Club), has amyloidosis and is a member of the Amyloidosis Foundation Nashville Support Group that meets monthly at the Vanderbilt University Medical Center.

Please come out and join us to raise awareness and funding for the Amyloidosis Foundation!

You can read about his story and get more information about this event using this link. Thank you for your support.

Jul 22

I Ran for Joann - Run & Walk

Crystal Falls, MI

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Oct 21

"Run for Your Life!" 5k/10k

Clarkston, MI

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Oct 27

2017 Pittsburgh Research Benefit

Montour Heights Country Club

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