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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/

DONATE

To This Fundraiser

$235

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

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12% Raised of $2,000 Goal

Fundraise for this Campaign

The Team: $235 TOTAL RAISED SO FAR

JOIN THE TEAM

Want to help Fundraise or Volunteer for this amazing Fundraiser? Join the Team

Donor Comments

Shirley Messier

Shirley Messier

DONATION: $25

Ryan Messier 2 weeks ago

E and Eeebs

E and Eeebs

DONATION: $25

2 weeks ago

Anonymous

ANONYMOUS

2 weeks ago

Mary Brokaw

Mary Brokaw

DONATION: $5

For my grandson Tanner Hines recently diagnosed . 2 weeks ago

Mayra Garcia

Mayra Garcia

DONATION: $40

We need all the voices and support for rare diseases. 2 weeks ago

Katie, Josh and Kids

Katie, Josh and Kids

DONATION: $25

Happy Birthday Nana! 2 weeks ago

Lisa Helms Guba

Lisa Helms Guba

DONATION: $100

In Memory, Dean Helms 2 weeks ago

Anonymous

ANONYMOUS

DONATION: $5

2 weeks ago