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DYSKERATOSIS CONGENITA OUTREACH INC's Fundraiser:

Dyskeratosis Congenita Outreach, Inc.

DYSKERATOSIS CONGENITA OUTREACH INC's Photo
DYSKERATOSIS CONGENITA OUTREACH INC's Photo
DYSKERATOSIS CONGENITA OUTREACH INC's Photo
DYSKERATOSIS CONGENITA OUTREACH INC's Photo
DYSKERATOSIS CONGENITA OUTREACH INC's Photo
DYSKERATOSIS CONGENITA OUTREACH INC's Photo

THE STORY:

Dyskeratosis Congenita Outreach, Inc. is a 501 (c)(3) grassroots, volunteer-operated foundation serving patients and families affected with Dyskeratosis Congenita & Telomere Biology Disorders. Our mission is to provide information & support services to families worldwide affected by Dyskeratosis Congenita & Telomere Biology Disorders, to encourage the medical community's research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers. Dyskeratosis Congenita is a devastating and extremely rare genetically inherited disease. It can affect people of any age, but more often attacks children. It can wreak havoc on almost any system in the body, causing bone marrow failure, pulmonary fibrosis, and liver problems, susceptibility to various cancers, and a host of other symptoms. Because it is so rare, most doctors have never seen a case, often resulting in misdiagnosis and mistreatment, with disastrous consequences. For similar reasons, most patients are unlikely ever to meet anyone else with the condition, and experience feelings of helplessness and isolation. That's where we come in. Dyskeratosis Congenita Outreach was formed at the urging of the National Institutes of Health to provide information and support to patients and families stricken with the disease. We connect families with each other, enable communication between patients and DC-experienced doctors, and educate the medical community in the hope of improving the accuracy of diagnosis and efficacy of treatment. The rarity of the disease also makes fundraising very difficult, as we have a tiny pool of affected families from which to draw, and most of those are financially strapped by the expenses of fighting the disease. We need your help! Your donation will help us in our work to support families with DC by providing care packages for DC patients undergoing treatment, bi-annual newsletter, attending medical conferences and putting on an amazing family camp that will next be held in Fall 2018. Visit our website for more information on our amazing work: https://www.dcoutreach.org/

$435

MONEY RAISED
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  • Anonymous

    $5

  • Lisa Helms Guba

    $100

  • Katie, Josh and Kids

    $25

  • Mayra Garcia

    $40

  • Mary Brokaw

    $5

  • Anonymous

     

  • E and Eeebs

    $25

  • Shirley Messier

    $25

  • Kim Yaden

    $50

  • Robin Huiras-Carlson

    $15

  • Laura Sullivan

    $25

  • The Close family

    $50

  • Bryan and Julie Clark

    $50

  • Miles & Linda Wilhelm

    $10

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22% Raised of $2,000 Goal

The Team: $435 TOTAL RAISED SO FAR

Donor Comments

Miles & Linda Wilhelm

Miles & Linda Wilhelm

DONATION: $10

1 month ago

Bryan and Julie Clark

Bryan and Julie Clark

DONATION: $50

Josh Clark 2 months ago

The Close family

The Close family

DONATION: $50

2 months ago

Laura Sullivan

Laura Sullivan

DONATION: $25

2 months ago

Robin Huiras-Carlson

Robin Huiras-Carlson

DONATION: $15

2 months ago

Kim Yaden

Kim Yaden

DONATION: $50

2 months ago

Shirley Messier

Shirley Messier

DONATION: $25

Ryan Messier 2 months ago

E and Eeebs

E and Eeebs

DONATION: $25

2 months ago

Anonymous

ANONYMOUS

2 months ago

Mary Brokaw

Mary Brokaw

DONATION: $5

For my grandson Tanner Hines recently diagnosed . 2 months ago