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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. Dr. Darcy Tannehill, amyloidosis patient, Pittsburgh resident and member of the Amyloidosis Foundation Board of Directors, 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 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


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 Knoxville.

This was a historic day and one Ms. Haffner has been pursuing for years. 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.


March Designated as Amyloidosis Awareness Month

March Designated as Amyloidosis Awareness Month

Thank you to efforts of Amyloidosis Foundation Board Member Charlotte Haffner in Tennessee and AF employees in Michigan, we can now officially announce that Amyloidosis Awareness month is recognized by these states in March 2018.

Both resolutions were also connected to the annual celebration of Rare Disease Day in each state, spreading awareness not only for amyloidosis, but for the over 7,000 rare diseases in the United States.

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

 


Donations from the Heart

Donations from the Heart

When Paige and Juan Sanchez decided to renew their vows and host a formal wedding on October 7, 2017, they opted to do something special in lieu of receiving gifts. They included this poem (written by Paige) in their wedding invitation:

Since this marriage is not brand new, we already have a thing or two.

We’re in no need of pots or pans, we just want to lend a helping hand.

We picked an organization close to our heart, in hopes that your donation will give the cure a start.

Your company on our big day is the best gift of all, and each donation makes a difference, big or small.

Paige’s mother, Jennifer Brink, has ATTR amyloidosis. This is a rare, hereditary disease that has affected many members of her family. The TTR amyloid protein is mainly manufactured in the liver. Jennifer had a liver transplant early in 2017 and wasn’t sure if she would be able to attend the wedding. We are thankful to stay she was there to celebrate this happy occasion with her daughter and extended family, as seen in these beautiful photos.

The Amyloidosis Foundation awards research grants annually to those who target the challenges in the field of amyloidosis. In total, Paige and Juan raised over $1,500 for the Amyloidosis Foundation Research Program. We are grateful for their generosity and support, and wish them a lifetime of happiness.

 

 

 

 


Cardiac Amyloidosis Webinar

Cardiac Amyloidosis Webinar

Did you miss our webinar about ATTRwt Cardiac Amyloid? Would you like to listen again or send the link to a patient? Click here and enjoy Dr. Mathew Maurer’s presentation.

Learn about the symptoms, diagnosis and treatment of this often overlooked, not uncommon but manageable disease.


Golf to Support the Amyloidosis Foundation

Golf to Support the Amyloidosis Foundation

Join us for our annual Amyloidosis Foundation Golf Fundraiser on Saturday, May 12 at The Fountains in Clarkston, MI.

This is a scramble – all skill levels are welcome! Last year we had a wonderful day and look forward to an even bigger success in 2018.

Registration starts at 8am, shotgun start at 9am. Lunch is scheduled for 2pm.

Cost for single is $110, a foursome is $400. We have many opportunities for sponsors and volunteers, please use the links below for more information on how you can support this important fundraiser.

Save the date and register today!

 

May 05

Nashville Support Group Meeting

Vanderbilt University Medical Center-East

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May 12

2018 Golf Fundraiser

The Fountains

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Oct 26

3rd Annual Pittsburgh Research Benefit

Montour Heights Country Club

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