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MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION's Fundraiser:

With Myositis Sometimes Zebras Have Spots

MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION's Photo
MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION's Photo
MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION's Photo
MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION's Photo
 

Message from a child living with Juvenile Dermatomyositis
May 14, 2017

My name is Aubrey and I am 9 years old. I was DX with Juvenile Dermatomyositis, Lipodystrophy, and a Pituitary Tumor when I was 6 years old.  See more

BENEFITING: MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION

EVENT DATE: May 01, 2017

THE STORY:

Myositis Support and Understanding is a 501(c)3 nonprofit organization founded by Myositis patients, for Myositis patients. May is Myositis Awareness Month, our largest opportunity to raise awareness, spread educational resources, and fundraise to ensure we have funds to continue to provide our current programs and services and to build upon our mission and create new opportunities for myositis patients. 

 This year our awareness theme reflects on how myositis, as a rare disease affecting approximately 50-75K in the U.S., is a very complicated chronic illness. No two patients, even with the same form of myositis, experience the same symptoms, complications, or response to available treatments. There are many less rare diseases that mimic myositis and therefore getting an accurate diagnosis is often years in the making. This is why our focus this year is how, "With Myositis, Sometimes Zebras Have Spots." The zebra is a well-known representation of rare diseases. There is a saying in the medical community, "when you hear hoofbeats think horses, not zebras." This means that doctor were being taught to look for the most common cause of a patient's symptoms (horses) while with Myositis, we need them to think zebras (rare diseases). The ’Spots’ spots indicate unique aspects of how patients and caregivers experience myositis in many different ways including complications, hardships, how it affects everyone surrounding the patient, the creativity of patients in creating and building their own assistive devices, etc. We ask you now to please give generously this year as we have many plans in moving forward. Using new technologies will help us reach more and more patients to ensure they have the support and assistance they need to live with this rare, isolating, autoimmune disease that has no cure, very few treatments, and with Inclusion body myositis, no treatments at all. Your help will ensure that patients are not left on their own in seeking a diagnosis and treatment from inexperienced physicians and other healthcare providers. Getting an early diagnosis is key for patients to potentially live a better life with myositis. Each day a patient goes undiagnosed is another day myositis wreaks havoc on their bodies. You can, and will, make a difference by making a contribution to MSU!

$1,165

MONEY RAISED
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  • CSI Pharmacy

     

  • Joey R.

    $50

  • Lauren Landman

    $50

  • Jeanette Owens

    $25

  • Taylor Rozich

    $25

  • Brittany Novratil

     

  • Conde Farley Family

     

  • Doreen

    $50

  • Donetta Schieffer and Family

    $50

  • J. Williams

     

  • Leach Family

     

  • Lisa Gibbs

    $50

  • Tom & Cindy Mooney Family

     

  • Tom Nancy Brett and Bryce Thomson

    $100

  • Selmy Brenda Canto

    $50

  • Gabe Canto

    $100

  • Shelby Gibbs

    $60

  • Judy

    $50

  • The Gary Family

     

  • Denise Monaco

    $50

  • The maramaldi family

    $25

  • Sarah Harvey

    $25

  • Michele Mancuso

    $50

  • From two generous people we met playing pool!

     

  • Chad Landman

    $50

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12% Raised of $10,000 Goal

Fundraise for this Campaign

The Team: $1,165 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Lauren Landman

Amount Raised

$1,065

Fundraiser Title

MYOSITIS SUPPORT AND UNDERSTANDING ...

Amount Raised

$50

 

1% Raised of $10,000 Goal

Fundraiser Title

LEKIHA MORGAN

Amount Raised

$50

Fundraiser Title

Cynthia Booker

Amount Raised

$0

Fundraiser Title

Jerry Williams

Amount Raised

$0

 

0% Raised of $1,200 Goal

Fundraiser Title

Emily Filmore

Amount Raised

$0

Donor Comments

Chad Landman

Chad Landman

DONATION: $50

5 months ago

Michele Mancuso

Michele Mancuso

DONATION: $50

5 months ago

Sarah Harvey

Sarah Harvey

DONATION: $25

6 months ago

The maramaldi family

The maramaldi family

DONATION: $25

Thank you for all you did for my son gladys. Im sooo sorry for your loss 6 months ago

Denise Monaco

Denise Monaco

DONATION: $50

6 months ago

The Gary Family

The Gary Family

6 months ago

Judy

Judy

DONATION: $50

6 months ago

Shelby Gibbs

Shelby Gibbs

DONATION: $60

I love you Landman's 6 months ago

Gabe Canto

Gabe Canto

DONATION: $100

6 months ago