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Amyloidosis Fundraiser in Memory of Kevin Q. Sullivan

Amyloidosis Fundraiser in Memory of Kevin Q. Sullivan

Please join us for a fun and casual evening as we raise money and spread amyloidosis awareness, in memory of KingBee, Kevin Q. Sullivan.  Enjoy hors d’oeuvres along with a cash bar while strolling through this beautifully restored home in Grand Rapids, MI. You’ll have the opportunity to place silent auction bids on some interesting gift baskets and mingle with friends while showing your support for this event.

We look forward to seeing you. 100% of all funds raised will benefit the Amyloidosis Foundation. Don’t wait – purchase your tickets today as this event is sure to sell out!

Click here to purchase tickets.


Louisiana Passed Resolution to Recognize March as Amyloidosis Awareness Month

Louisiana Passed Resolution to Recognize March as Amyloidosis Awareness Month

Thank you to the efforts of Holly Keene Foret from Baton Rouge, LA who worked with her legislators to pass House Resolution 108, which officially recognizes March as Amyloidosis Awareness month in Lousiana. State Senator Claitor and Representative Steve Carter were instramental in passing this legislation and we thank them for their commitment to the amyloidosis community.

Holly’s father was diagnosed in October 2017 with AL amyloidosis and is currently receiving treatment. She wanted to create this annual month of awareness in her state to share details about this rare disease and increase the chances for earlier diagnosis for patients.

This resolution was signed by John A. Alario, Jr., President of the Senate and Taylor F. Barras, Speaker of the House of Respresentatives.

If you would like help advocating for a similar resolution in your state, please contact us via email: info@amyloidosis.org. Let’s try and make this a national month for amyloidosis awareness!


2018 Spring Newsletter

2018 Spring Newsletter

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

Click here to read.


Amyloidosis Foundation – Nashville Support Group Meeting

Amyloidosis Foundation – Nashville Support Group Meeting

We invite all patients, caregivers, friends and family to attend. The next meeting will be held at the Vanderbilt University Medical Center, in the Vanderbilt Clinic (Room 2809), on Wednesday, June 13, 11am – 1pm. Lunch will be provided.

Contact our Group Leader, Charlotte Haffner, to RSVP: charhaffner@gmail.com.

You may also register online for our meeting here.

We look forward to seeing you!


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.

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.