box caret-down caret-left caret-right caret-up cart chevron-down chevron-left chevron-right chevron-up closeCreated with Sketch. ContactCreated with Sketch. documentCreated with Sketch. Events facebook feed2 google-plus instagram link linkedin mail NewsCreated with Sketch. NewsletterCreated with Sketch. peopleCreated with Sketch. play-screenCreated with Sketch. playCreated with Sketch. search toolkitCreated with Sketch. twitter vileCreated with Sketch. youtube

AF Board Member Shared her AL Amyloidosis Journey

AF Board Member Shared her AL Amyloidosis Journey

Just prior to her passing, Darcy Tannehill was advocating for research, patient support and awareness for amyloidosis. Here is the interview she did with Rare Disease Report, sharing details of her journey. We thank her for her courage, strength and compassion.

Click here to watch.


Managing hATTR Amyloidosis – Video

Managing hATTR Amyloidosis – Video

In an interview with Rare Disease Report, Mathew Maurer, MD, Arnold and Arlene Professor of Cardiology at Columbia University, explained the standard of care and current management tactics for individuals with hATTR Amyloidosis.

Click here to watch.


AL Amyloidosis Video

AL Amyloidosis Video

Heather Landau, M.D., Assistant Attending Physician at the Memorial Sloan Kettering Cancer Center, explains AL – or Light Chain – amyloidosis. In this video, she describes in detail the clinical definition of the disease, what organs are affected, and early presentation. Thank you Heather for spreading amyloidosis awareness.

Click here to watch.


3rd Annual Pittsburgh Amyloidosis Research Benefit

3rd Annual Pittsburgh Amyloidosis Research Benefit

The Amyloidosis Foundation is proud to announce the 3nd Annual Pittsburgh Amyloidosis Research Benefit on Friday, October 26, 2018. Our goal is to raise donations for the AF Research Grant Program. Since 2005, the foundation has awarded over $1.7 million to young researchers pursuing a cure for amyloidosis. Courtney Sullivan, daughter of Dr. Darcy Tannehill (amyloidosis patient, Pittsburgh resident and member of the Amyloidosis Foundation Board of Directors) who passed away on April 21, is the Chairwoman for our fundraiser.

The event will be at the Montour Heights Country Club starting at 5:30pm. The evening will include strolling appetizers, gourmet dinner, live music, wine raffle, cash bar and a silent auction. Proceeds from this event will allow us to continue our support for ground-breaking medical research.

Join us on this special night as we raise funds for research in memory of Darcy and celebrate our amyloidosis community! Last year we raised $58,000 and with your help we are confident we can surpass that total this year.

Tickets are $175 and we have tables of eight for $1400, click here to purchase. Event sponsorships are also available, please use this link.

 

Hotel reservation information

Sheraton Pittsburgh Airport, 1160 Thorn Run Road, Coraopolis, PA  15108

Phone: 412-262-2400 (hotel) or 866-716-8134 (reservations)

The hotel is 5 minutes from the event and there is a complimentary shuttle to the benefit.

 

Contact                  

For more information, please contact the Amyloidosis Foundation at 1-877-AMYLOID.

Purchase tickets here


Amyloidosis Foundation Announces the Passing of Board Member Darcy B. Tannehill, Ed.D.

Amyloidosis Foundation Announces the Passing of Board Member Darcy B. Tannehill, Ed.D.

It is with deep regret that we have lost our good friend Darcy Tannehill, who passed away on Saturday, April 21, 2018 after courageously and passionately battling amyloidosis. She will be greatly missed and we send our heartfelt condolences out to her family and friends for their loss.

Darcy was the Associate Professor of Education at Robert Morris University in Pittsburgh, PA.  After her diagnosis in 2012, she became an advocate for researching a cure. Darcy had served as chairwoman for the annual Pittsburgh Amyloidosis Research Benefit since 2016. The event this year, on Friday, October 26, will be chaired by her daughter, Courtney Sullivan.

In 2017 Darcy joined the Board of Directors of the Amyloidosis Foundation. Earlier in 2018, she made a generous gift to the Department of Medicine at the University of Pittsburgh’s School of Medicine, establishing the Dr. Darcy B. Tannehill Amyloidosis Research and Education FundDarcy made a planned gift to ensure that her hard work will continue. She hoped that her gift helps Pitt to become a powerhouse in amyloidosis research, ultimately helping to save many lives.


Nashville Support Group Meeting

Nashville Support Group Meeting

This group is for everyone seeking amyloidosis support. We will host our next meeting at the Vanderbilt University Medical Center (East, Room 8380B) in Nashville on Saturday, May 5, 9am – 12pm. Breakfast will be provided.

Alan Stuckey, Certified Nuclear Technician from the University of Tennessee-Knoxville, will be our guest speaker and talk about the protocols for non-invasive imaging of amyloidosis patients at the U of T by using PET/CT and SPECT/CT.

RSVP here. Please contact our support group leader, Charlotte Haffner, if you need additional information: charhaffner@gmail.com.

 


Amyloidosis Foundation 2017 Annual Report

Amyloidosis Foundation 2017 Annual Report

The Amyloidosis Foundation began in 2003 as a small idea to support patients, which has grown into an international resource – celebrating our 15th anniversary in 2018.

Our 2017 Annual Report gives details on our finances, research grant program, fundraising events, donors and more.

See how we are making a remarkable difference in the amyloidosis community for patients, researchers, physicians and more. We look forward to the next few years with hope for a cure.

Click here to read the report.


“Jeans Friday” Donations Support the Amyloidosis Foundation

“Jeans Friday” Donations Support the Amyloidosis Foundation

When Jennifer Irick’s co-workers at Pacific Northwest Title decided to choose the Amyloidosis Foundation as their monthly charity for “Jeans Friday” donations, in honor of her father who is battling amyloidosis, she was beyond touched. Jennifer has worked at PNT in Washington for over 18 years and says it feels like her second family.  She and her co-workers raised a total of $545!

The charities are nominated by employees, each who have a personal connection to the groups they suggest. A minimum of $5 is required each time they choose to wear jeans. All of the money is then sent directly to the charity at the end of month. They all believe strongly in giving back and supporting nonprofits that do good work.

Jennifer’s mother and father live outside of Madison, Wisconsin and she visits as often as she can. She is amazed at her father’s strength over the years, facing this rare disease head-on and never losing hope. Her family is grateful for the doctors and researchers who have developed treatments for amyloidosis and looks forward to a cure in the near future.

Thank you Jennifer and everyone at PNT for your support!


Knoxville, TN Support Group Meeting

Knoxville, TN Support Group Meeting

This group is for anyone seeking amyloidosis support. They will meet at the University of Tennessee Cancer Institute in Knoxville on Saturday, March 24, from 10:30am – 2pm. The address is 1925 Alcoa, Building F.

Lunch will be provided. For further details and to RSVP, please contact Charlotte Haffner, Group Leader, via email: charhaffner@gmail.com.

You may register online for our meetings here.

 


Governor of Tennessee Appoints March as Amyloidosis Awareness Month

Governor of Tennessee Appoints March as Amyloidosis Awareness Month

On Wednesday, March 14, 2018, Governor Bill Haslam officially recognized the month of March as Amyloidosis Awareness month in the great state of Tennessee. With him in the photos here are Amyloidosis Foundation Board Member Charlotte Haffner, amyloidosis ambassador Mrs. Pat Dunn, Representative Glen Casada, plus Emily Martin, PhD and Jonathan Wall, PhD from the University of Tennessee at Knoxville.

This was a historic day and one Ms. Haffner has been pursuing for months. It was her goal that we have an annual month dedicated to raising awareness of this rare disease and supporting all of the amyloidosis patients across the U.S.A.  Starting with Tennessee, followed close by Michigan and pending legislation in many other states, we will shine a light on amyloidosis, for an increase in early diagnosis, better treatments and hopefully soon a cure.

Let’s continue this movement until every state acknowledges March as Amyloidosis Awareness month! If you would like help in getting your state involved, please send us an email at: info@amyloidosis.org.