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Tallie Ehman's Fundraiser:

HIBM and a HOPE for a CURE!

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Tallie's Photo
Tallie's Photo
Tallie's Photo
Tallie's Photo
Tallie Ehman

THE STORY:

I have been diagnosed with HIBM (Hereditary Inclusion Body Myopathy) a progressive and debilitating muscle wasting disorder caused by a gene defect. It touches those between the ages of 20 to 40 and, although progression is slow, it typically leads to total disability within 10 -15 years.

I, among other patients, are a relatively small group suffering this disorder (less than 1000 worldwide). Doctors and brothers, Dr. Babek Darvish and Dr. Daniel Darvish founded ARM (Advancement of Research for Myopathies), a non-profit organization searching for a cure after they were diagnosed with HIBM as well.

After many years of my body getting weaker and weaker over time, I was finally diagnosed by having to leave my country and go to the Mayo Clinic in Rochester, MN. With the knowledge that the disease was relatively unknown, the future seemed rather bleak but this year while on holiday in California, I met the wonderful Darvish families and got in contact with some courageous, inspiring people who were also patients. I learned that there is hope for the future, that there is hope for a cure!

I encourage everyone to check out ARM's website (hibm.org) to learn more about this terrible muscle wasting disorder and I encourage you to donate what you can to help fund the cure because the cure IS within reach but they need our help.

We may be small but we are mighty!

DONATE

To This Fundraiser

$550

MONEY RAISED
  • Tallie Ehman

    $50

  • Barry & Enid Burton

    $500

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11% Raised of $5,000 Goal

Fundraise for this Campaign

The Team: $550 TOTAL RAISED SO FAR

Donor Comments

Barry & Enid Burton

Barry & Enid Burton

DONATION: $500

6 years ago

Tallie Ehman

Tallie Ehman

DONATION: $50

6 years ago