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Husband and Wife Scientists Finding a Cure for Her Fatal Genetic Disease

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Jeff Miller

THE STORY:

“It’s an incredibly special thing to have 20 years’ advance notice to work like hell to change the fate that you’ve been given” – Eric Minikel

Sonia Vallabh and Eric Minikel were newlyweds in their late 20s, nurturing successful careers in law and consulting, when tragedy struck. Sonia's mother, only 51 years old, suddenly began to show signs of dementia. Within a few months, she died of progressively severe dementia. Shortly after her death, Sonia learned that her mother had died from prion disease, a 100% fatal and untreatable brain disease caused by the malfunction of a brain protein. Sonia also learned that she inherited the mutation that causes this disease, meaning that unless a treatment or cure is developed, she will succumb to the same fate as her mother within the next 20 years.

While most people would descend into despair, Sonia and Eric decided to take action. They quit their jobs, began furiously studying science and took jobs interning in laboratories. With a single-minded focus on curing prion disease, within a few years they began PhD programs at Harvard Medical School and joined the Broad Institute in Cambridge, MA, a leading institute studying genetics, cancer, and rare diseases. They received a grant for emerging scientists called BroadIgnite, which allowed them to build the first lab to study prion disease in Cambridge. They have begun developing a human cell model of prion disease and studying healthy prion proteins in hopes of discovering ways to treat prion disease.

Where will my donation go? 

  • Your donation will go directly to the Broad Institute, a 501(c)(3) nonprofit research organization.  Donations are 100% tax deductible to the extent allowed by law
  • Funds will directly benefit Sonia and Eric's research into prion disease, including laboratory supplies, chemical libraries, and equipment to analyze, clone, and sequence human cells.  

Why donate to prion disease research?

  • Orphan illnesses are not well funded by pharma due to lack of profit incentive.
  • Studies have linked brain diseases like Alzheimer’s and ALS to misfolded proteins and prion-like activity.
  • Enormous costs of dementia - $800 billion worldwide, growing rapidly as baby boomers age.
  • Prion disease traces to a single gene and a single protein, making it a uniquely tractable test case for developing therapies for neurodegenerative diseases.
  • Potential to be leader in gene therapeutic technologies which may help cure other heritable diseases.

For more information on Sonia and Eric’s mission:

CBS News video segment: http://cbsn.ws/236XR52

Broad Instititute bios: http://broad.io/prions

Boston Globe article: http://bit.ly/1mSUnmo

Harvard Magazine article: http://bit.ly/1RJ3l4a

The Atlantic article: http://theatln.tc/18RmtrH

New Yorker article: http://bit.ly/1HTIdO1

Prion Alliance: http://www.prionalliance.org/

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To This Fundraiser

$650

MONEY RAISED
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  • Jim Skees

    $100

  • LuAnn Zubak

    $50

  • Teresa Nankervis

    $50

  • Lisa Spencer

    $25

  • Anonymous

    $25

  • Mary Clark

     

  • Angela Wong

    $250

  • Linda Joyce

     

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26% Raised of $2,500 Goal

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The Team: $650 TOTAL RAISED SO FAR

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Donor Comments

Linda Joyce

Linda Joyce

We lost my Mom, M. Priscilla Hughes to this monster on 6/27/16, my sisters, brother, her grandchildren and all her family and friends miss her more and more every day..Love u always Momð 2 years ago

Angela Wong

Angela Wong

DONATION: $250

2 years ago

Mary Clark

Mary Clark

In Memory of Tina Zubak 2 years ago

Anonymous

ANONYMOUS

DONATION: $25

Sarit dana 2 years ago

Lisa Spencer

Lisa Spencer

DONATION: $25

In memory of my mother, Paulette Wilson, who died from sCJD in 2007. Thank you both for what you are doing. God Bless! 2 years ago

Teresa Nankervis

Teresa Nankervis

DONATION: $50

In tribute of Rosarie Rea 2 years ago

LuAnn Zubak

LuAnn Zubak

DONATION: $50

In memory of my beautiful sister Tina 2 years ago

Jim Skees

Jim Skees

DONATION: $100

So that other families do not have to experience what we did earlier this year. 2 years ago