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Amyloidosis “Rock Star”

Amyloidosis “Rock Star”

Written by Debra Payne, Wife and Caregiver

Valentine’s Day 2013, we received a call from my husband’s nephrologist. A week earlier we had no idea what a nephrologist was. And doctors don’t typically call with biopsy results the next day. Something wasn’t right.

It began when our new family doctor ran a comprehensive series of tests on all his new patients. My husband turned out to have an extremely high protein count in his urine. We were referred to a nephrologist to discover why, not for a minute imagining anything seriously wrong with him.

The nephrologist was also at a loss to explain the dramatically climbing protein count and planned a kidney biopsy the day before Valentine’s Day. Valentine’s Day, we got the call. My husband had been diagnosed with an extremely rare blood disorder called amyloidosis, AL amyloidosis in particular. The doctor wanted to send samples to Mayo Clinic for verification and referred us for immediate treatment to a local oncologist at Rocky Mountain Cancer Center in Longmont, Colorado. 

In shock, we tried to learn everything we could about amyloidosis. One of the first things we read was that patients had a 12 to 15-month survival rate. That was devastating. We learned as much as we could about the process in as simple terms as we could understand and explain to family and friends: the body spontaneously producing a folded protein that clogs the organs reducing their ability to function. The organ most impacted in my husband were his kidneys.

The oncologist advised us not to read anything on the internet relating to amyloidosis unless it was from Mayo Clinic or another reliable cancer site. He explained treatment: low dose chemotherapy to disrupt the production of the folded proteins and an autologous stem cell transplant at Presbyterian Saint Luke’s in Denver, Colorado, to hopefully reset the body’s protein producing systems. The entire treatment seemed unimaginably frightening to us. We could only focus on baby steps.

We went through 11 weeks of low dose chemo while my husband continued to work a full-time job. I found a job with medical insurance in case my husband became permanently disabled. He went through hospital pre-testing to make sure his heart would hold up under the high dose chemo; surgical insertion of a tunneled catheter for the injection of chemo, the removal and reinsertion of stem cells, and medications; going on short term disability for 2 doses of high dose chemo, a month-long hospital stay and, because of his amazing results, only another month of recuperation at home.

The scope of concerns was unending. We worried about insurance and paychecks and prescription costs. We worried about disability and qualifying for experimental studies. We worried about doctors and their success rates with this disease and survival of the treatment and side effects. We worried about bills, medical-caused bankruptcy, and charges for required tests not covered by insurance. We worried about jobs and taking time off and driving back and forth to hospitals while maintaining a household. And overall the most pressing concern: we worried about whether he was going to survive this illness and the treatment.

The blur of hospital tests, treatments, and frantic phone calls are as raw today as five years ago. But the doctors refer to my husband as a “rock star”, saying he didn’t read how this illness was supposed to go and just made his own recovery back to good health. His protein count went from uncountable at one point to well within normal range, kidney function returned to normal range, and no sign of amyloidosis today.


Running for Amyloidosis Research at the 2018 Chicago Marathon

Running for Amyloidosis Research at the 2018 Chicago Marathon

Jenna Mersch and Claire Bridgeforth ran the 2018 Chicago Marathon in honor of Rob Stafford, a life long friend, charismatic role mode, and beloved NBC-5 news anchor. He was diagnosed with amyloidosis, a rare blood disease in January 2017 and has been in remission since July 2017.

They met Rob and the Stafford family through their best friend Amery and spent many University of Wisconsin-Madison Football Game Days, UW Parent Weekends and trips to Hinsdale with the family  therafter. In their own way, they wanted to give back and honor his incredible journey by raising money for the Amyloidosis Foundation.

We appreciate their support. So far they have raised over $5,000 in donations! These funds will be utilized for research grants, raising awareness, and supporting patients and their families.


2nd Annual 5k/10k Walk/Run for Research

2nd Annual 5k/10k Walk/Run for Research

Only 3 more days!! Register NOW and bring your friends! Join us at the second annual Amyloidosis Foundation Run for Your Life! 5k/10k Walk/Run. This event will raise money to provide medical research and will help fund programs that benefit amyloidosis patients and their families.

The event will be held Saturday, October 13, 2018 at Independence Oaks County Park in Clarkston, MI (meet at the Twin Chimneys). The 10k will kick off at 9:30 a.m. followed by the 5k at 9:45 a.m. Awards will be given for top qualifiers as well as best costume. Race includes food and drink at the finish line plus Chronotrack timing by Newton Timing & Race Services Company.

Register here!

All participants will receive:

  • Run for Your Life! Long sleeve tech shirt
  • Custom medal at the finish

Race Information Links Below:

Thank you in advance for your support!

 


Celebrating Kevin Sullivan and Raising Funds for Research

Celebrating Kevin Sullivan and Raising Funds for Research

On Thursday, September 27 the family and friends of Kevin Sullivan came together to hold a fundraiser in his memory and raise amyloidosis awareness. The event was held at Venue3Two, a beautifully restored home in Grand Rapids, MI. It was a beautiful night, everyone mingled inside and out while enjoying hors d’oeuvres and drinks while bidding on the unique items in the silent auction.

Nancy, her children Keenan, Kelsie and Connor all shared stories and memories of Kevin throughout the evening, along with lots of family photos of trips and holiday celebrations. Dr. David Fermin, Kevin’s cardiologist from Spectrum Health in Grand Rapids, spoke about Kevin’s strength and spirit, plus gave a short presentation of amyloidosis.

Over 70 people came out to support the family and the Amyloidosis Foundation. In total, they raised $13,900 which will go toward the annual research grant program at the foundation. Thank you to everyone to attended the event and donated to honor Kevin, a special event for an extra special man.


Amyloidosis Gets Center Stage on Big Ten Network

Amyloidosis Gets Center Stage on Big Ten Network

Thanks to all of the broadcasters on the Big Ten Network (BTN) who wore Amyloidosis Foundation lapel pins on October 6 to promote amyloidosis awareness and show support for their partner and friend, Matt Millen, who is currently battling AL. It was great to have the national spotlight on this rare disease. We appreciate the BTN team sharing our logo and phone number throughout the day on various college games.

Here are a few video highlights from Saturday:

BTN1 

BTN2

BTN3

BTN4


Fall Webinar – Amyloidosis 2030: A SyFy Special

Fall Webinar – Amyloidosis 2030: A SyFy Special

Join us on October 15 at 11am (EDT) and take a look 12 years into the future at how the risks of AL and ATTR will be managed and the diseases treated. Mark this date on your calendar, you won’t want to miss this event!

The webinar will be hosted by Raymond Comenzo, MD, Professor of Medicine and Pathology at Tufts University School of Medicine.

The presentation will last approximately 45 minutes, then Dr. Comenzo will take questions from the audience. Please share these details with your family and friends to spread amyloidosis awareness.

Register online here.

 


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


The Assistance Fund Announces New Hereditary Amyloidosis Financial Assistance Program

The Assistance Fund Announces New Hereditary Amyloidosis Financial Assistance Program

The Assistance Fund, an independent charitable patient assistance foundation, recently launched a new fund to support hereditary amyloidosis patients. This type of amyloidosis is one of the systemic amyloidosis diseases that are caused by inheriting a gene mutation.

“Finally, patients have hope for treating this disease,” said Mary O’Donnell, President and CEO of the Amyloidosis Foundation. “The Assistance Fund’s financial assistance program for hereditary (hATTR) amyloidosis will provide extremely important support for patients who may otherwise be unable to seek treatment due to high out-of-pocket costs.”

They provide financial assistance for medication copays, health insurance premiums, and basic healthcare needs to patients with certain disease types.

For more information, call (855) 512-280.

Read the entire press release here.

To apply for assistance, click here.

 


Summer 2018 Newsletter

Summer 2018 Newsletter

Get caught up on all the latest news in the amyloidosis community! Read about the new FDA-approved hATTR treatment, our upcoming webinar, fundraising and event updates plus a patient story.

Click here.


Cocktails 4 a Cause in Indiana!

Cocktails 4 a Cause in Indiana!

Libbi Conway wanted to give back and support amyloidosis patients and families, knowing first-hand what that feels like. Her husband, Jason, was diagnosed in 2015 and is now in remission, so she thought it was time to plan something fun – Cocktails 4 a Cause.

The event in July included a great night of cocktails, live music and amazing food – celebrating with friends and family. The goal was to raise funds for the Amyloidosis Foundation and Northwest Memorial Hospital, where Jason was treated. The night was a huge success and Libbi traveled to our office in Clarkston, MI to deliver the $1,000 check personally. We are so grateful for people like the Conway’s, who want to give back and support others going through this journey. 

Read Jason’s #amyloidosis patient story here. He is a husband, father, teacher and coach. See how the journey of this rare disease brought his family closer.