Clara Inspired

Product Description

Midlothian, Virginia, United States

Donations are 100% tax deductible

Supporters

Our daughter, Clara, has a genetic disease so rare that it doesn’t even have a name. She is one of a few hundred people in the world identified as having a mutation (or “change”) on her STXBP1 gene. As a result, she will have lifelong physical and intellectual disabilities. Clara is a gift and has taught us more than we could have ever imagined about what it means to live joyfully, celebrate life’s small victories, and love those around you. We owe her, and others who are impacted by genetic diseases, the chance to live their very best life – and in many cases save their life. If gene therapy and other genetic breakthroughs can do this, then let’s start putting one foot in front of the other!

In August 2019, Casey ran the Leadville 100 Mile Trail Run in 29 and 1/2 hours and raised $50,000 for Clara Inspired!! In 2020, he played 100 songs during an 8-hour livestream and raised over $15,000! Additionally, there have been so many amazing fundraisers by individuals for birthday’s, Facebook fundraisers, T-shirt sales, etc. We are so thankful!

Clara’s Grandma (pictured above) passed away on 11/28/21. We know she would be over-the-moon for donations to be made to Clara Inspired on her behalf.

The majority of the funds collected are donated to organizations that are deeply involved in researching, treating, and curing genetic diseases. In 2020, Clara Inspired awarded a $30,000 grant to Weill Cornell Medicine for a clinical trial related to STXBP1.

In 2021, Clara Inspired awarded a $31,000 gift to Columbia University. This gift will advance Dr. Christopher Makinson’s vital multi-modal research in the Institute of Genomic Medicine, and will support the purchase of state-of-the-art equipment to help understand the genetic causes of STXBP1 related disorders and, ultimately, find an effective treatment and cure.

Our goal is to cure genetic diseases within our children’s lifetime. That’s a long time and seems really hard, right? That’s exactly the point. Together, we can do hard things!

Maria Hedus

2 years ago

$100

Devon Eagle

3 years ago

$500

Carolyn Blasinsky

3 years ago

$200

Jenny Morand

3 years ago

$25

Jonah Bartlett

3 years ago

$100

Laura Hunt

3 years ago

$100

Nancy Taylor

3 years ago

$100

Kai Sommer

3 years ago

$20

JUDITH THOMAS

3 years ago

$50

David Vogeleer

3 years ago

$100

Michael Stafford

3 years ago

$100

Kim and Scott Thompson

3 years ago

$500

Michael & Barbara Atkinson

3 years ago

$250

Brenda Adams

3 years ago

$100

Tara Wood

3 years ago

$100

Art Anselene

3 years ago

$100

Kathy Roberts

3 years ago

$100

Kathy Roberts

3 years ago

$250

Colleen Jennings

3 years ago

$100

Peg Stafford

3 years ago

$100

Abby Strong

@abbynpc is with you #abbystrong #wearerare

5 years ago

Clara Inspired