Ultra Marathon Run Supports the Amyloidosis Foundation

Ultra Marathon Run Supports the Amyloidosis Foundation

On November 4, Shawn Forman ran the 36th Annual Mountain Masochist 50 Mile Ultra Marathon with his best friend Joe to raise money and awareness for the Amyloidosis Foundation. The 50 mile course is a physically challenging combination of roads, jeep trails, and single track that can cause even the most experienced runner to breathe a sigh of relief at the finish line in Montebello, VA.

As we all know, amyloidosis is a rare disease that often goes undiagnosed until its too late for treatment. This was the case with Shawn’s mother, Kathy, who suffered for over seven months, and was sent from one doctor to another without a diagnosis. After they finally found an excellent doctor that diagnosed her with amyloidosis, she passed away one month later in 2011.

Since her passing, Shawn was ready to dedicate himself to completing an ultra marathon and raising funds to support the Amyloidosis Foundation.  His race was phenominal – he finished in under 10 hours (#63 out of 278, 90 of which didn’t finish the race).

A total of 28 friends and family donated to his online fundraiser, raising $1684.

Thank you Shawn and Joe for your strength and committment for amyloidosis patients. As Shawn says, “Making patients and doctors aware is the only way to make progress with a rare disease like this. It was an amazing feeling to push my body that far, and being able to raise money for a cause that means so much to all of us who have been affected by this horrible disease. I’m so happy we were able to greatly surpass the goal I set ($1,000), and just as important, raise awareness for the disease.”


The Amyloidosis Foundation Set a Record on #GivingTuesday 2017!

The Amyloidosis Foundation Set a Record on #GivingTuesday 2017!

1 in 10 people in the US are living with a rare disease. Amyloidosis is a rare disease that has no cure. Patients who have this disease are strong fighters, that have struggled for years to get a final diagnosis, often times too late for any treatment.

The Amyloidosis Foundation is located in a small town in Michigan – but we have a global reach. We have a staff of only four – though we have raised enough funds since 2005 to award over $1.4 million in research grants. Our focus is patient support, education, awareness and research.

This year we raised over $10,000 on #GivingTuesday. Donations came from near and far, Poland to California, Pennsylvania to Georgia. We are proud to serve these amazing patients and their families, as we fight for a cure.

On #ThankYouWednesday, we are grateful for our donors, patients, volunteers, Board of Directors, Scientific Advisors and everyone in the amyloidosis community for their passion.


2018 Amyloidosis Foundation Research Grant Recipients

2018 Amyloidosis Foundation Research Grant Recipients

The Amyloidosis Foundation is proud to announce our 2018 research grant awardees, whose research targets the challenges in the field of amyloidosis. We look forward to their success and hope for a cure in the near future.

To read more about their focus and where they are conducting their research, please use this link.


Today is #GivingTuesday!

Today is #GivingTuesday!

Please support the Amyloidosis Foundation today on this global day of giving. Donate here & share this link with your family and friends on #GivingTuesday.

Thank you.



Great Night at the 2nd Annual Pittsburgh Amyloidosis Research Benefit

Great Night at the 2nd Annual Pittsburgh Amyloidosis Research Benefit

The Pittsburgh community came out strong to support the Amyloidosis Research Benefit for the second year in a row on Friday, October 27. The proceeds from this benefit totaled over $50,000!

The co-chairs for this event, AF board member and patient Darcy B. Tannehill, Ed.D. and her daughter Courtney A. Sullivan, were proud once again to donate these funds to the Amyloidosis Foundation Research Grant Program.

The Montour Heights Country Club hosted the event and over 90 people had a wonderful time enjoying live jazz music and delicious food. Guests participated in the silent auction (with over 80 items), a putting green and wild card contest plus the annual  wine pull (a choice of many beautifully wrapped bottles) which made the night very special. 

We heard patient Darby Yohman talk about his amyloidosis journey and Julie Kowalski, speak about her role as a caregiver for her husband. It was important and very touching to hear how this rare disease has affected their lives and the need to fund research for a cure. Please mark your calendar for next year’s benefit on Friday October 26, 2018! 

Our sponsors made this benefit possible with their generous sponsorships, listed below.


Nashville Support Group Meeting

Nashville Support Group Meeting

This group is for everyone seeking amyloidosis support. We will host a meeting at the Vanderbilt University Medical Center in Nashville on Thursday, December 14, 12:30pm – 2:30pm in room 8380B. This will be a potluck lunch.

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

 


Amyloidosis Foundation 5k/10k Runners Finish Strong!

Amyloidosis Foundation 5k/10k Runners Finish Strong!

We are thankful for everyone who participated in the 2017 Amyloidosis Foundation 5k/10k “Run for your life!” event on Saturday, October 21 in Clarkston, MI. The weather was perfect, the course at Independence Oaks County Park was lovely with the leaves in full color.

We had 130 register for the races and runners came from all over Michigan: Traverse City, Grand Rapids, Troy, Royal Oak, Elk Rapids, South Lyon, Crystal Falls and others from Denver, CO and Canada!

We had a large group that attended to honor the memory of Kevin Sullivan, who passed away from amyloidosis. His wife Nancy, daughter Kelsie and sons Connor & Keenan all ran for “Team Kingbee”.

Thanks again to all of our volunteers and sponsors, without your support this event would not have been possible. See you next year!

 

 


The 2nd Annual Pittsburgh Amyloidosis Research Benefit

The 2nd Annual Pittsburgh Amyloidosis Research Benefit

The Amyloidosis Foundation is proud to announce the 2nd Annual Amyloidosis Research Benefit in Pittsburgh, PA on Friday, October 27, 2017. 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

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

Special thanks to our event sponsors:


Hills and Hollers Half Marathon & 5K

Hills and Hollers Half Marathon & 5K

Join us at the 5th annual Hills and Hollers Half Marathon & 5K on Saturday, November 11 at the Burwood Community Center in Thompson’s Station, TN. This event supports amyloidosis patients and their families. This is a great event for the whole family – they even have a Little Holler Run! After the races, participants will enjoy refreshments while bidding on items in the silent auction.

Present Troubles Racing (a nonprofit organization) runs the event and raises funds by organizing multi-sport events (triathlons, duathlons, marathons, 1/2 marathons, bike rides, etc) in Tennessee. It is their goal to make others aware of this disease and raise financial support to help those affected by amyloidosis.  All funds raised will be split between the Amyloidosis Foundation, local Amyloidosis Foundation Support Groups, and Vanderbilt Amyloidosis Multidisciplinary Program patients. Thank you to Prothena for sponsoring this event.

Register here.