Support the Amyloidosis Foundation on #GivingTuesday!

Support the Amyloidosis Foundation on #GivingTuesday!

#GivingTuesday is November 27, a global day of giving fueled by the power of social media and collaboration.

Celebrated on the Tuesday following Thanksgiving (in the U.S.) and the widely recognized shopping events Black Friday and Cyber Monday, #GivingTuesday kicks off the charitable season, when many focus on their holiday and end-of-year giving.

You can join our team and support the AF a few different ways. First, print your #UNselfie here. Share your “why” – the reason you are passionate about funding amyloidosis research and spreading awareness. Post on your Facebook and Twitter pages, tagging the @amyloidosisfdn and using the following hashtags: #amyloidosis #GivingTuesday #AFturns15.

Second – give an online donation on our secure page. Share the link with your friends and families, challenge them to participate on this day of giving. Give for patients. Give for research. Give for education. Give for awareness. Give for a cure.

Let’s give. Patients depend on it.

Donate here.


3rd Annual Pittsburgh Amyloidosis Research Benefit a Smashing Success

3rd Annual Pittsburgh Amyloidosis Research Benefit a Smashing Success

Montour Heights Country Club was over-flowing with amyloidosis awareness on Friday, October 26, 2018 for our 3rd Annual Pittsburgh Amyloidosis Research Benefit. Over 100 friends and family came to support this special night, honoring the Chairwoman who started this event, Dr. Darcy Tannehill, who passed away in April. Her daughter, Courtney A. Sullivan, and son-in-law, Dr. Adam Sullivan, were the Co-Chairs this year and did an amazing job gathering silent auction gifts and over 90 bottles of wine for the annual “wine pull”.

Guests enjoyed a live jazz band, delicious hot appetizers and a gourmet meal plus the opportunity to bid on all the unique silent auction gifts. Over $53,000 was raised thanks to our generous donors and attendees, plus our event sponsors: University of Pittsburgh Medical Center, Eidos, Alnylam, Allegheny Health Network, Akcea and Takeda.

A great night was had by all and we thank the Pittsburgh community for making this annual event a success. See you next year!

 


Great Day for the 2nd Annual Amyloidosis Foundation Run/Walk

Great Day for the 2nd Annual Amyloidosis Foundation Run/Walk

It was a chilly start, but the sun was shining for our 2nd annual “Run for Your Life” 5k/10k event on Saturday, October 13, 2018. We had over 70 particpants plus many friends and family cheering everyone on at the beautiful Independence Oaks County Park in Clarkston, MI.

Thank you to all of our volunteers, sponsors and donors for making this such a special day. Join us next year!

Run results here.

Photographs by bib number here.

 

 

 

 

 


Amyloidosis Foundation Welcomes New Board Members

Amyloidosis Foundation Welcomes New Board Members

Daniel Lenihan, M.D., FACC joined the Washington University in St. Louis Department of Medicine in 2017 as a Professor in the Cardiovascular Division and Director of the Cardio-Oncology Center of Excellence. He previously directed the Clinical Research Enterprise in Cardiology at Vanderbilt University for 8 years. He is intimately involved in the latest treatment trials for cardiac amyloidosis. Dr. Leniihan is also the Chair for the amyloidosis symposium at Washington University in St. Louis on November 17, 2018 – details here.

Dr. Lenihan has been active in cardio-oncology and heart failure for nearly 20 years. The main focus of these efforts have included hemodynamic assessments, angiogenic growth factor response, novel cardiac biomarkers as well as optimal methods to prevent or detect heart failure at the earliest stage possible in patients undergoing treatment for cancer. Dr. Lenihan is at the forefront of concerted efforts to develop a viable Cardio-Oncology fellowship training program and continues to foster collaboration among a host of colleagues regionally, nationally, and throughout the world. He is the current president of the International Cardio-Oncology Society (ICOS), a professional association whose primary goal is to eliminate cardiac disease as a barrier to effective cancer therapy.

Adrienne Molteni, RN is currently at Vanderbilt University Medical Center located in Nashville, TN and works in the Infusion Center. She has been an RN for 25 years, primarily in Medical Oncology and has a personal business as a Certified Legal Nurse Consultant.

Her hobbies include horseback riding, traveling, scuba diving, hiking, playing tennis and golf. Adrienne is a Team Lead for an animal rescue/disaster response team in TN, the Wilson County Disaster Animal Response Team. She has three sons and two grandchildren.

We welcome them both to our board and look forward to their support.

 


Amyloidosis Symposium at Washington University in St. Louis

Amyloidosis Symposium at Washington University in St. Louis

The Amyloidosis Foundation is proud to be a partner at this event, “Contemporary Diagnosis and New Advances in the Treatment of Amyloidosis” on Saturday, November 17, 2018 at Washington University in St. Louis, MO, chaired by our Board of Director, Daniel Lenihan, MD.  This is a symposium for providers, patients and their families. Continuing Medical Education (CME) credits will be available.

Patients touched by amyloidosis and their families are invited to attend the lunch and afternoon session. The breakout sessions will allow attendees the opportunity to ask questions of various medical providers and network.

Guest faculty includes:

Morie Gertz, MD, Professor of Medicine
Mayo Clinic, Rochester, Minnesota

Jose Nativi Nicolau, MD, Assistant Professor of Medicine
University of Utah, Salt Lake City, Utah

This course is planned and designed inter-professionally by and for physicians and nurses. It is intended for physicians in cardiology, neurology, gastroenterology, oncology, hematology, nephrology, hospitialists, internists, family and general medicine as well as physician assistants, nurse practitioners and nurses.

The intended result of this activity is increased knowledge, competence, performance and skill. At the completion of the activity registrants should be able to:

•State the etiology and epidemiology of both TTR and AL amyloidosis
•Select appropriate diagnostic approach in amyloidosis
•Differentiate AL vs TTR in diagnosis of amyloidosis
•Outline current therapeutic options
•Describe current research developments in AL and TTR

Register here.


2018 Hills & Hollers Amyloidosis Fundraisers in Tennessee

2018 Hills & Hollers Amyloidosis Fundraisers in Tennessee

Join us on November 10, 2018 for the Hills & Hollers events near Nashville, TN! Present Troubles Racing, Inc., a nonprofit organization focused on raising amyloidosis awareness and supporting patients and families dealing with this disease, host this annual day of fun. The Hills and Hollers Half Marathon and 5K serves as their main fundraiser for the year.

The race begins and ends at the Burwood Community Center in rural Williamson County, TN. The Half Marathon is a looped course that features rolling hills and hollers (some call them hollows) through the communities of Burwood and Boston. The 5K is a mostly flat out and back run, sprint, or walk from the Community Center. The Hills and Hollers also includes the Little Holler Run; a .17 mile (300 Yards) fenced off course for kids 7 and younger.

Runners and thier families can also enjoy our race day silent auction with a variety of options to bid on such as gift cards, homemade baked goods, baskets, crafts, and more. The Hills and Hollers also claims to be the “best fed race in town.” There is no shortage of food and drink awaiting you at the finsh line.

They support the Amyloidosis Foundation and our mission to provide patient support, education, research and awareness.

More details on the event here.

Register here.


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.


Fall Webinar Recording – Amyloidosis 2030: A SyFy Special

Fall Webinar Recording – Amyloidosis 2030: A SyFy Special

Listen to this informative webinar that was recorded on October 15, 2018, taking a look 12 years into the future at how the risks of AL and ATTR will be managed and the diseases treated. The webinar was hosted by Raymond Comenzo, MD, Professor of Medicine and Pathology at Tufts University School of Medicine. After the presentation, Dr. Comenzo answered many interesting questions from patients, physicians and family members.

Please share this link with your family and friends to spread amyloidosis awareness.

Listen here.

 


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!