Bobby Black 5k for Amyloidosis Research

Bobby Black 5k for Amyloidosis Research

Bobby Black will forever be loved by his community. After his amyloidosis diagnosis, against all odds, he was blessed to have 8 additional years to shine, to smile, to make a difference. On Saturday, June 17, 2017 at Conestee Park in Greenville, SC we will honor his memory with a 5k race, with all funds donated to the Amyloidosis Foundation. Details here.

Here is a short video to see what an amazing teacher he was.

To honor his legacy, his friends and family want to give back by hosting this event to support amyloidosis research for a cure. Please help raise money for the Amyloidosis Foundation and help us, help others. Thank you for your support.

Registration or Donation link here.


Mill Creek Brewing Fundraiser

Mill Creek Brewing Fundraiser

On Thursday, May 18 please join us for a fundraiser benefitting the Amyloidosis Foundation near Nashville, TN –  $1 from every pint will be donated to the foundation alongside the proceeds from a silent auction. The event will begin at 6pm until 9pm.

Mill Creek Brewing Company will be hosting this event with members of the Nolensville, TN community. Patrick (a member of the Nashville Rugby Football Club), has amyloidosis and is a member of the Amyloidosis Foundation Nashville Support Group that meets monthly at the Vanderbilt University Medical Center.

Please come out and join us to raise awareness and funding for the Amyloidosis Foundation!

You can read about his story and get more information about this event using this link. Thank you for your support.


2017 Pittsburgh Amyloidosis Research Benefit

2017 Pittsburgh Amyloidosis Research Benefit

The Amyloidosis Foundation is proud to announce the 2017 Amyloidosis Research Benefit in Pittsburgh, PA on Friday, October 27. Our goal is to raise donations for the AF Research Grant Program. Since 2005, the foundation has awarded over $1.4 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, dinner, live music, 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.

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 will be available soon.

Contact

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

Purchase tickets here


Untangling Amyloidosis – Patient Webinar

Untangling Amyloidosis – Patient Webinar

One of the barriers patients and caregivers face in confronting this disease is confusion about how to diagnose and treat the different forms amyloidosis takes. Join us on Thursday, June 1 at 12pm (EST) for this informative presentation for patients and caregivers.

Vaishali (2)

Our webinar, narrated by Vaishali Sanchorawala, MD, a hematologist and Director of the world-renowned Boston University/Boston Medical Center Amyloidosis Center, and Frederick L. Ruberg, MD, the senior cardiologist with the group, is designed to educate the general public about amyloidosis.

Ruberg_Frederick_photo2017

Medical information will be presented in simple, straightforward terms that will be understandable without specialized training. The overall objective is to provide a clear and concise summary of the breadth of illness caused amyloidosis to empower patients and their families so that they can confront, adapt to, and hopefully defeat this debilitating disease.

This webinar is presented by the Amyloidosis Foundation and we thank our sponsor, Alnylam Pharmaceuticals.

Register here.


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 April 29 and October 28.

Guests at the April 29th meeting will include Jonathan Wall, PhD from the University of Tennessee Graduate School of Medicine and Catherine Summers from Alnylam.

You can register for our meetings here.

Lunch will be provided. For further details on location, time, please contact Charlotte Haffner, Group Leader, via email: charhaffner@gmail.com.


Spring 2017 Newsletter

Spring 2017 Newsletter

Hot off the press! Our Spring 2017 newsletter is filled with news and information you need to know from the Amyloidosis Foundation.

  • Meet Darcy Tannehill, new member of our Board of Directors
  • Read about new screening options for early diagnosis
  • See how the AF participated in Rare Disease Day 2017
  • Join us at our many fundraisers this Spring and Summer
  • Attend one of our support group meetings this year
  • Get details on the Utah Amyloidosis Symposium in June
  • Learn about our Planned Giving Program

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


“I Ran for Joann” 5k Run & 2 Mile Walk

“I Ran for Joann” 5k Run & 2 Mile Walk

The Amyloidosis Foundation will host a 5k run and 2 mile walk on Saturday, July 22, 2017 in honor of Joann Waldo. The event will take place in the Upper Peninsula of Michigan, during Crystal Fall’s Summer Fest.

Registration will begin at 7:00am at Runkle Lake Park (race starts at 9:00am). All pre-registered participants will receive a “I Ran for Joann” t-shirt for participating. After running or walking, participants will cool down and fuel up with assorted snacks and refreshments and will have the opportunity to participate in basket raffles.

All proceeds will be used by the Amyloidosis Foundation for patient support, education, awareness and research leading to a cure.

Register here.


Nashville Support Group Meeting

Nashville Support Group Meeting

This group is for all who seek amyloidosis support. They meet monthly at Vanderbilt University Medical Center in Nashville from 11:30am – 2:30pm at the Vanderbilt Clinic, 2nd Floor, Room 2701.

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

April 26

Guest speakers at this meeting will include Shelton Harrell, NP from Vanderbilt University Medical Center (Stem Cell department) who will talk about pain management and Lori Apple from Alnylam will give updates on TTR amyloidosis and the Alnylam Act.

May 24

June 28

July 26

August 23

September 27

October 25

November 22

December – Date TBD

We will also host a few meetings at the University of Tennessee Cancer Institute in Knoxville. The dates are April 29 and October 28.

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

 


Northern California Support Group Meeting

Northern California Support Group Meeting

This Amyloidosis Foundation support group welcomes all patients, families and friends. They meet quarterly (January, April, July and October) from 10am – 2 pm. Refreshments provided. Remaining dates listed below. Please RSVP with the number attending the meeting here.

 

2017 Dates:

April 22 

Dr. Michaela Liedtke from the Stanford Amyloid Team will be our guest speaker. Also joining us at this meeting will be Landon M. Bogan, CPE, from Stanford’s Clinical Pastoral Education Program, and two of the clinical pastoral education students who will be there to enhance their clinical pastoral training by observing our amazing group in action and interacting with patients and family members who may be interested.

Meeting Details:

Blake Wilbur Cancer Center, 875 Blake Wilbur Dr., 2nd floor conference room – Stanford, CA

 

July 15 – Walnut Creek Kaiser, 1425 S. Main St., 3rd floor conference room

October 21 – Stanford, 875 Blake Wilbur Dr., 2nd floor conference room

Please contact support group leader, Dena Heath, if you need more information:

Northern California AF Support Group

Northern California AF Facebook Page


New Amyloidosis Foundation Board Member, Darcy Tannehill, Ed.D.

New Amyloidosis Foundation Board Member, Darcy Tannehill, Ed.D.

The Amyloidosis Foundation is proud to announce that Darcy Tannehill is a new member of our Board of Directors. Dr. Tannehill has spent the majority of her career in higher education working in academic affairs, student affairs, enrollment management, international admissions, and campus management.

She is currently an Associate Professor of Education at Robert Morris University in Pittsburgh, PA. She has served as a manuscript editor and a research journal reviewer. Her undergraduate degree in psychology and sociology and her master’s degree in education are from Duquesne University. Her doctorate in administrative and policy studies—higher education management is from the University of Pittsburgh.

Darcy was diagnosed with light chain amyloidosis in May of 2012, undergoing multiple rounds of chemotherapy and a stem cell transplant. While it took more than six years and visits to eight specialists to get a diagnosis, she is fortunate in that she has no major organ damage. Darcy’s husband died in 2009 but her daughter, son-in-law, and granddaughter live less than a mile away and provide wonderful family support. Her hobbies include Shetland sheepdog rescue, playing the piano, and researching online learning, adult learning, leadership, student support services, and, of course, amyloidosis.

She served as the chair of the Pittsburgh Amyloidosis Research Benefit in 2016. Its success warrants it to become an annual event—the next one scheduled already for October 27, 2017.

For a complete list of our Board of Directors, use this link.

May 07

2017 Pittsburgh Half Marathon

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May 13

Annual AF Golf Outing

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May 21

Half Ironman in Chattanooga, TN

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Jun 01

Untangling Amyloidosis - Patient Webinar

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Oct 27

2017 Pittsburgh Research Benefit

Montour Heights Country Club

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