amyloidosis


Amyloidosis Foundation Announces 2022 Research Grant Recipients

Amyloidosis Foundation Announces 2022 Research Grant Recipients

We are pleased to announce the funding of three new Junior Investigator Research Grants for 2022. The Amyloidosis Foundation Research Grants have been awarded to the following applicants:

Sébastien Bender, PhD of the University of Limoges in France.  His study is titled “Mouse model of AL amyloidosis: toward a better understanding of the disease”.

Zainul S. Hasanali, MD, PhD of University of Pennsylvania, PA.  His study is “Targeting amyloidosis through study of calcium dependent endoplasmic reticulum resident protein folding chaperones and their effect on antibody production in plasma cells”.  

Taxiarchis Kourelis, MD of Mayo Clinic, Rochester, MN. His research is titled “Characterizing the role of the tissue immunome in the pathogenesis of renal AL amyloidosis”.

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!


2021 Giving Tuesday

2021 Giving Tuesday

On November 30, 2021, people all around the world are coming together to tap into the power of human connection and strengthen communities and change our world. Will you be one of them? 

Amyloidosis Foundation will be participating in GivingTuesday and we need your help! 

By joining the GivingTuesday movement, you’re proving that in times of uncertainty, generosity can bring the whole world together. 

Here is how you can get ready to give:

  1. Mark your calendar 
  2. Give. On November 30, go to our donation link and give.
  3. Spread the word. Encourage your friends and family to join you in creating real impact on November 30 by sharing what our mission means to you and why you support our organization. Make sure to use hashtag #GivingTuesday and tag us so we can share!

Let’s rally together to build stronger communities. 

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 2020, we raised over $15,000. This year our goal is $20,000 and we need your help!

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.


Alnylam Reports Positive Topline 18-Month Results from HELIOS-A Phase 3 Study of Vutrisiran in Patients with hATTR Amyloidosis with Polyneuropathy

Alnylam Reports Positive Topline 18-Month Results from HELIOS-A Phase 3 Study of Vutrisiran in Patients with hATTR Amyloidosis with Polyneuropathy

CAMBRIDGE, Mass.–(BUSINESS WIRE)–Oct. 27, 2021– Alnylam Pharmaceuticals, Inc. (Nasdaq: ALNY), the leading RNAi therapeutics company, today announced that the HELIOS-A Phase 3 study of vutrisiran, an investigational RNAi therapeutic in development for the treatment of the polyneuropathy associated with hereditary transthyretin-mediated (hATTR) amyloidosis, met all secondary endpoints measured at 18 months

Read the full press release here.



Spring Webinar Recording: Emerging treatment landscape for Cardiac Amyloidosis

Spring Webinar Recording: Emerging treatment landscape for Cardiac Amyloidosis

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


Jonathan Wall receives $1.79 million to develop amyloidosis treatment

Jonathan Wall receives $1.79 million to develop amyloidosis treatment

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.


DARZALEX FASPRO® (daratumumab and hyaluronidase-fihj) Becomes the First FDA-Approved Treatment for Patients with Newly Diagnosed Light Chain (AL) Amyloidosis

DARZALEX FASPRO® (daratumumab and hyaluronidase-fihj) Becomes the First FDA-Approved Treatment for Patients with Newly Diagnosed Light Chain (AL) Amyloidosis

January 15, 2021 (HORSHAM, Pa.) – The Janssen Pharmaceutical Companies of Johnson & Johnson announced today the U.S. Food and Drug Administration (FDA) approval of DARZALEX FASPRO® (daratumumab and hyaluronidase-fihj), a subcutaneous formulation of daratumumab, in combination with bortezomib, cyclophosphamide and dexamethasone (D-VCd) for the treatment of adult patients with newly diagnosed light chain (AL) amyloidosis.1 DARZALEX FASPRO® is the first and only FDA-approved treatment for patients with AL amyloidosis.

Read the complete press release here.


2021 “Light the Night for Amyloidosis” Awareness Campaign

2021 “Light the Night for Amyloidosis” Awareness Campaign

“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.


A Life with hATTR amyloidosis

A Life with hATTR amyloidosis

Dustin Kaehr

I am 44 years old and 4th generation living with hATTR. My dad passed away at 53 and my grandpa at 61. I’ve been around hATTR as long as I can remember. When I was little (5-6 years old), our family was giving blood samples to IU Med Center for research. It came into our family through my paternal Great-Grandmother. At 26, I confirmed my diagnosis via a genetic test and then at 36 via a biopsy.

Our variant, Ser84Ile, normally begins with neuropathy in the hands. That began with me in my early 30s. At 36 I had carpal tunnel release surgery, although the relief was short-lived. In my early 40s, my feet began to be affected. Today, I still have numbness and tingling in my hands and, at times, pin and needle pain in my feet. This year, at 43, we confirmed that there is cardiac involvement in my heart, thankfully the only organ involvement to date. While the functional impact is minimal to date, the disease continues to progress, as I saw it do in my other family members.

As for treatments, I have been on Tedgsedi since July 2018 and see the doctors at the Cleveland Clinic. One of the hardest parts about living with this disease, and actually most rare diseases, is you will have inevitably find yourself knowing more than local doctors. It is why getting to a hospital that has experience with the disease is so important. I have been so thankful for the knowledge and expertise of my doctors.

I have 4 boys (17, 15, 13, 11) so being involved in patient advocacy/disease awareness is critically important to me. While none of them have been tested yet, I am hopeful because of the treatment options currently available and those coming to the market! I have done patient advocacy work with Akcea (makers of Tegsedi) speaking to doctors, patients, and caregivers across the country. I am also getting involved in Rare Across America and will be speaking to my U.S. Senators and Representatives this Fall.

While a diagnosis like this is nothing you wish for, I am thankful for it. It has deepened my faith and give me clarity and focus to live a life of impact. I am a Leadership coach and public speaker. I share my story of hATTR to help others see that life is short. To remind people that what really matters is Relationships, Influence, and Impact. I use it to hopefully inspire others to live life to the fullest. I want them to live a life of meaning with their family, friends, work, and community. A life with hATTR has helped me do just that.