Donations from the Heart

Donations from the Heart

When Paige and Juan Sanchez decided to renew their vows and host a formal wedding on October 7, 2017, they opted to do something special in lieu of receiving gifts. They included this poem (written by Paige) in their wedding invitation:

Since this marriage is not brand new, we already have a thing or two.

We’re in no need of pots or pans, we just want to lend a helping hand.

We picked an organization close to our heart, in hopes that your donation will give the cure a start.

Your company on our big day is the best gift of all, and each donation makes a difference, big or small.

Paige’s mother, Jennifer Brink, has ATTR amyloidosis. This is a rare, hereditary disease that has affected many members of her family. The TTR amyloid protein is mainly manufactured in the liver. Jennifer had a liver transplant early in 2017 and wasn’t sure if she would be able to attend the wedding. We are thankful to stay she was there to celebrate this happy occasion with her daughter and extended family, as seen in these beautiful photos.

The Amyloidosis Foundation awards research grants annually to those who target the challenges in the field of amyloidosis. In total, Paige and Juan raised over $1,500 for the Amyloidosis Foundation Research Program. We are grateful for their generosity and support, and wish them a lifetime of happiness.

 

 

 

 


Cardiac Amyloidosis Webinar

Cardiac Amyloidosis Webinar

Did you miss our webinar about ATTRwt Cardiac Amyloid? Would you like to listen again or send the link to a patient? Click here and enjoy Dr. Mathew Maurer’s presentation.

Learn about the symptoms, diagnosis and treatment of this often overlooked, not uncommon but manageable disease.


Golf to Support the Amyloidosis Foundation

Golf to Support the Amyloidosis Foundation

Join us for our annual Amyloidosis Foundation Golf Fundraiser on Saturday, May 12 at The Fountains in Clarkston, MI.

This is a scramble – all skill levels are welcome! Last year we had a wonderful day and look forward to an even bigger success in 2018.

Registration starts at 8am, shotgun start at 9am. Lunch is scheduled for 2pm.

Cost for single is $110, a foursome is $400. We have many opportunities for sponsors and volunteers, please use the links below for more information on how you can support this important fundraiser.

Save the date and register today!

 


Amyloidosis Foundation – Celebrates 15th Anniversary in 2018!

Amyloidosis Foundation – Celebrates 15th Anniversary in 2018!

Thank you for your support since 2003. What began as a small idea has become an international resource for amyloidosis patients, families, physicians and researchers. We are proud to share our 15th anniversary with all of you. Please read the press release from our President, Mary E. O’Donnell, here.

Here is a snapshot of some of our accomplishments:

  • The AF has funded over $1.7 million in research grants
  • Supported over 36+ Grand Rounds (physician education programs) across the U.S.
  • Attended over 45 major medical conferences, hosted our awareness booth often with patient volunteers
  • Distributed thousands of informational pamphlets to patients, family members, friends, physicians and medical students
  • Assisted countless patients and family members in learning about amyloidosis: its symptoms, diagnosis and treatment options – via telephone, email, social media and on our website        
 Share your comments about how the Amyloidosis Foundation has helped you and your family – send us an email at info@amyloidosis.org
 

  More details on how you can help us celebrate will be coming soon!


2018 Winter Newsletter

2018 Winter Newsletter

Happy new year! Catch-up on all the news and information from the Amyloidosis Foundation in our first newsletter for 2018.

Filled with details of our webinar in February, special welcome to our new Board of Directors, listing of the 2018 AF Research Grant recipients, updates on fundraisers and much more.

Read all about it here.


Webinar – ATTRwt Cardiac Amyloid: Often Overlooked, Not Uncommon and Manageable

Webinar – ATTRwt Cardiac Amyloid: Often Overlooked, Not Uncommon and Manageable

Join us on Wednesday, February 7 at 3pm (EST) to learn the latest information on this type of amyloidosis from Mathew S. Maurer, MD. The webinar will define cardiac amyloidosis and focus on wild type transthyretin cardiac amyloidosis (ATTRwt).

A description of the process of protein formation will be reviewed and how this process can go array leading to cardiac amyloidosis. Names for ATTRwt will be delineated, as well as the epidemiology and common symptoms and signs in affected patients. Finally, we will review methods employed to make a diagnosis as well as emerging treatment strategies.

Save the date for this informative webinar – you will have a chance to have your question personally answered by Dr. Maurer during the Q & A at the end of his presentation.

Register here

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Mathew S. Maurer, MD, is the Arnold and Arlene Goldstein Professor of Cardiology and Professor of Medicine at Columbia University Medical Center. A general internist and geriatric cardiologist with advanced training in heart failure and cardiac transplantation, he has received grants from the National Institute on Aging to study cardiovascular changes in older patients and specializes in the care of patients with heart failure and a preserved ejection fraction, including patients with amyloidosis.


Spreading the Love and Raising Funds with Homemade Jelly

Spreading the Love and Raising Funds with Homemade Jelly

(By Marcelle Hanemann, reprinted with permission from the Washington Parish Living magazine, Bogalusa, LA)

Bethany “Noel” Martin, an 11-year-old sixth grade student at Ben’s Ford Christian School, bonded immediately with her “Pawpaw,” Gary Newman. But her beloved Pawpaw is no longer with her, he passed away just after Christmas last year to amyloidosis.

She said he was the “one of the nicest men I have ever met,” and that “he always had a great attitude and never complained.” Now, the daughter of Pastor Caleb and Toni Martin and granddaughter of Pastor Jerry Lynn and Connie Martin and of Beth Newman, has a plan to get the rare disease into the public’s eye and to eventually help fund a cure for amyloidosis.

She’s making jelly in her Pawpaw’s memory and donating the proceeds to the Amyloidosis Foundation. The business is called “Spread the Love,” and it’s a family affair. “Noel likes to cook and clean, and take care of her baby brother,” her mother said. “Her ambition is to be a homemaker.”

She uses her grandmother Martin’s family recipes, and her grandmother and mother are often in attendance to provide guidance.

Currently the ladies make muscadine, fig, mahaw, and strawberry jellies. And Noel makes jelly cakes, as well. She sells blueberry, mayhaw, and muscadine jelly for $6 a pint and for $4.50 a half pint, and fig and strawberry jelly for $5 a pint and $3.50 for half a pint. Spread the Love jellies are available for purchase at Simmons Flea Market in Bogalusa, LA.

Noel can also be followed on Instagram at @spread_the_love_by_noel.

So far, the young entrepreneur has raised $231 with her Spread the Love jellies. But her Pawpaw’s sprit is sure to help her collect much more.


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.