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Tara Voogel's Fundraiser:

Run for HIBM - 2013

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Tara's Photo

BENEFITING: ADVANCEMENT OF RESEARCH FOR MYOPATHIES

ORGANIZER: Sandra

EVENT DATE: Mar 17, 2013

Tara Voogel

THE STORY:

Sandra Darvish wrote -

All the runners on this page know one or more patients with this orphan disease, and are running to support their friends or loved ones! Research is moving forward, and clinical trials are going on, soon no one will have to suffer from this debilitating disease, thanks to all the volunteers and fundraisers that helped raise funds for research on HIBM!

"My husband has this rare muscle wasting disorder that nobody has heard of unless you know someone who is affected, called HIBM. With his brother, who suffers from the same (yes, it's hereditary), he started a non-profit, ARM (Advancement of Research for Myopathies), to raise funds for research. In 10 years they have done an amazing job in finding treatments for this disease, and now they have moved research forward to clinical trials with two possible treatments. Patients are testing treatments for this disease! The next step will be gene therapy, and eventually stem cell therapy to bring back lost muscle.... I will run my first marathon to raise funds for HIBM research!" - Sandra Darvish

 

DONATE

To This Fundraiser

$1,920

MONEY RAISED
  • Tara Voogel

     

  • Shari Missaghi

     

  •  
  •  
  •  

The Team: $9,124 TOTAL RAISED SO FAR

Fundraiser Title

Sandra Darvish

Amount Raised

$5,819

 

29% Raised of $20,000 Goal

Fundraiser Title

Bryan McElroy

Amount Raised

$835

 

17% Raised of $5,000 Goal

Donor Comments

Shari Missaghi

Shari Missaghi

5 years ago

Tara Voogel

Tara Voogel

These funds are under my name, however the funds are donated by generous donors who want a cure for HIBM 6 years ago