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DYSKERATOSIS CONGENITA OUTREACH INC's Fundraiser:

Team Telomere- Dyskeratosis Congenita Outreach, Inc.

DYSKERATOSIS CONGENITA OUTREACH INC's Photo

BENEFITING: Global Genes

EVENT: 2017 Denim Dash

THE STORY:

Join Team Telomere for the 3rd Annual Global Genes Denim Dash!
Whether you are local to Southern California, or want to participate as a virtual dasher from anywhere in the world, you can participate to support Team Telomere- Dyskeratosis Congenita Outreach.
Local Dasher:
Join Team Telomere for a fun, family friendly evening at the Newport Dunes Waterfront Resort & Marina at the local Denim Dash 5k Eggstravaganza event on April 13, 2017 from 5pm -7pm. You will have the option to dash one lap, or complete your entire 5K by completing three laps around the Dunes. There will be food, music, arts and crafts, Easter eggs, and even an opportunity to get your photo with the Easter Bunny! It is the perfect opportunity to show your support for rare and connect with other local families.

Address: 1131 Back Bay Drive, Newport Beach, CA 92660

Time: 5pm-7pm

Virtual Dasher: Not in Southern California? No problem! Our Denim Dash will begin April 1 and continue through April 30, 2017. Team Telomere supporters from all over the world will walk, run, swim, bike, or roll 3.1 miles to support DC Outreach. The Denim Dash 5k for Rare Disease can be completed as a virtual race, so you have the flexibility to participate wherever and whenever is most convenient for you! Dash anytime between April 1st-30th to help fund the Global Genes RARE Patient Impact Grant Program with 50/50 of the proceeds going back directly to DC Outreach! (That's right- 50 percent of donations come back to your favorite charity to support our rare families with Dyskeratosis Congenita.

By supporting us in the Dash for Rare, you are supporting the awesome works DC Outreach provides to its families.  $5, $10, $20, $50, $100; it doesn't matter. Please support DCO in whatever monetary amount you can manage.

We have partnered with Global Genes and are strongly encouraging our families & friends to make a donation to Dyskeratosis Congenita Outreach (DCO) so our group can continue to exist as a non-profit organization. We have been operating on a shoestring budget, but without the additional funds we will be in the negative and would not be able to operate and provide all of the outstanding services to families as we have had done in the past. Your donation to DC Outreach's provides hope and support to a community that often feels alone. Most of us had never met another person with this disease until we found DC Outreach. Dyskeratosis Congenita is so rare that we find ourselves to be the only DC patient in a room full of rare diseases. At present there is no cure and virtually no scientifically proven treatments for DC. Dyskeratosis Congenita (DC) and Telomere Biology Disorders (TBD) are devastating, genetic diseases with severe, and often fatal, symptoms. The disease manifests throughout the body and can cause bone marrow failure, pulmonary fibrosis, liver problems, susceptibility to various cancers, and a host of other serious issues. Its symptoms often masquerade as other illnesses, and because of its rarity, most doctors have never seen a case. DC Outreach is focused on providing resources to all those affected by DC & TBD, raising awareness of the condition and sharing educational material with patients & physicians. Our efforts are all volunteer based and all money raised goes towards our outreach efforts.

For more information, please see https://www.dcoutreach.org.



You're helping us bring much needed hope to all affected families and helping to provide resources so we can continue to education medical providers at professional conferences! Thank you for your support!



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MONEY RAISED
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    $100

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The Team: $100 TOTAL RAISED SO FAR

Donor Comments

Anonymous

ANONYMOUS

DONATION: $100

1 year ago