Nashville Support Group Meeting

Nashville Support Group Meeting

This group is for all who seek amyloidosis support. Our next meeting is Wednesday, August 23. We will meet at the Vanderbilt Clinic, 11:30am – 2:00pm in Room 2702.

Lunch will be provided. Please RSVP with number attending the meeting here.

You may also register for our meetings online here.


We will also host a few meetings at the University of Tennessee Cancer Institute in Knoxville. The next date is October 28.

Please contact our support group leader, Charlotte Haffner, if you need additional information:


Michigan Community Supports the Amyloidosis Foundation – “I Ran for Joann”

Michigan Community Supports the Amyloidosis Foundation – “I Ran for Joann”

The Amyloidosis Foundation hosted a 5k run and 2 mile walk on Saturday, July 22, 2017 in honor of Joann Waldo, who passed away from amyloidosis in 2016.

Joann’s best friend Shari Tollefson and her daughter Alicia (Joann was Alicia’s Godmother) organized this fundraiser with lots of help from the community in the beautiful Upper Peninsula of Michigan, during Crystal Fall’s Summer Fest.

Thanks to over 150 participants, $12,000+ was raised which will be used by the foundation for patient support, education, awareness and research leading to a cure.

We appreciate all the runners, walkers and many volunteers who made this day so special. Everyone enjoyed snacks and refreshments after the run/walk and bid on the basket raffles donated by local companies and friends of Joann. Plans are being made to make this an annual event.

Thank you to all of the sponsors below for your support,

including Results Broadcasting, WHTO Radio Now and

Frog Country Radio for public service announcements for this event.


Aspirus Iron River Hospital & Clinics

CoVantage Credit Union

Dickinson County Healthcare System

Cindy Fabbri

Florence Motor Sales

Fresenius Kidney Care             

Ray and Theresa Hagglund

Iron County Medical Care Facility

Jacobs Funeral Home

Joseph Hufanda, D.D.S.

Lato Lumber Co., Inc

Lud Stoor Agency

Minerick Logging Inc.

Nash Funeral Home

Northwoods Family Physical Medicine

Nylund Foods Inc.

Martin & Kathy Phelan

RE/MAX North Country

The John Fornetti Dental Center

Today’s Smile Dental

Birthday Spin Event for Amyloidosis Research

Birthday Spin Event for Amyloidosis Research

Join Kelli Heald and her friends at GritCycle in Monarch Beach, CA on Friday, August 18 to celebrate her birthday and once again raise funds for the Amyloidosis Foundation Research Grant Program.

Contact GritCycle directly to reserve your bike, cost is $50/per person. The phone number is (949) 388-5102. Website link is here.

If you can’t attend and want to donate, please do so here. Share with your friends and family, to create awareness of this rare disease.

Thank you for your support!

Golf Fundraising Toolkit

Golf Fundraising Toolkit

Are you interested in organizing a golf fundraiser to benefit the Amyloidosis Foundation? Use our golf toolkit!

Need help, directions and ideas? We are here for you to plan the ultimate event. From sponsorships to volunteers, we have created an easy-to-use timeline to coordinate your fundraiser. Call or email us anytime with questions – good luck!

To get started, just click here.

Summer 2017 Newsletter

Summer 2017 Newsletter

Summer is here! Read our latest newsletter to find all the news and information you need from the Amyloidosis Foundation.

  • Learn about the recent Utah Amyloidosis Symposium
  • Details and link for our webinar – “Untangling Amyloidosis”
  • Save the date! Pittsburgh Amyloidosis Research Benefit – October 27
  • Board of Director article by Darcy Tannehill ‘Spreading Awareness & Providing Support’
  • See photos from the annual AF Golf Outing
  • Join us at our many fundraisers this Summer and Fall
  • Shop the Amyloidosis Foundation – t shirts, bracelets, pins and more

Click here to read our newsletter and share with your friends and families.

N. California Support Group Meeting

N. California Support Group Meeting

This support group welcomes all patients, families and friends. They will meet on Saturday, July 15 from 10am – 2pm.  The meeting will take place at Prothena Biosciences, 331 Oyster Point Boulevard, South San Francisco, CA. Refreshments provided.

Guest speakers will include Gene Kinney, CEO of Prothena, Spencer Guthrie of Prothena and amyloidosis physicians from UCSF and Stanford.

Please RSVP by July 1 with number attending the meeting here.

Amyloidosis Foundation Attends American Association of NP Conference

Amyloidosis Foundation Attends American Association of NP Conference

The AF hosted a booth last week at the 2017 American Association of Nurse Practitioners conference in Philadelphia, spreading amyloidosis awareness with their attendees.

Thank you to AF Board Member Charlotte Haffner and Sheryl Kernodle, RN from Vanderbilt University Medical Center, for volunteering at our booth. Over 4,500 NP’s attended the event and we were thrilled to pass out amyloidosis brochures and talk about symptoms, diagnosis and treatment options with everyone. #RareDisease

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, October 28, from 10:30am – 2pm.

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

You may register online for our meetings here.


University of Utah Amyloidosis Symposium a Big Success

University of Utah Amyloidosis Symposium a Big Success

On Friday, June 9 the following groups hosted the first Amyloidosis Symposium in Utah: the Huntsman Cancer Institute, the University of Utah Healthcare and the Amyloidosis Foundation.

The keynote speakers were Daniel Lenihan, MD (back row, left) from Vanderbilt University in Nashville, TN and Raymond Comenzo, MD (front row, right) from Tufts University in Boston, MA.

Jose Nativi, MD from the University of Utah (far right) spoke about TTR amyloidosis and coordinated the event, which included four other physicians from Utah. A patient panel was moderated by our Board Member, Charlotte Haffner (far left).

Over 120 people attended the symposium: faculty, nurses, medical students, residents, patients and caregivers. Thanks to everyone in Utah for your support.




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.

Aug 23

Nashville Support Group Meeting

Vanderbilt Clinic

Oct 21

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

Clarkston, MI

Oct 27

2017 Pittsburgh Research Benefit

Montour Heights Country Club