UPCOMING EVENTS

RARE DISEASE DAY

Awareness Ribbon Fundraiser

Rare Disease Day is an international patient-driven awareness day held every year on the last day of February. This year we celebrate those challenged by DeSanto-Shinawi Syndrome, a rare genetic disorder, with our DESSH Awareness Ribbon campaign. Our ribbon design features a large mesh bow with black and gold details and zebra print, the recognized "color" representing the rare disease community.  By displaying this awareness ribbon prominently on your mailbox or front door for rare disease day, you are shining the light of awareness on DESSH and bringing us one step closer to a cure. To order your ribbon click the button below and spread the word! To learn how to start fundraising with your own ribbon campaign, click here.

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PAST EVENTS

DASH FOR DESSH VIRTUAL 5K

The DESSH Foundation hosted its second awareness walk, the Dash for DESSH, virtually! While it was important to remain socially distant, it also allowed the many DESSH supporters around the world to participate! Racers were invited to run, walk, hop, bike, pogo-stick, skateboard, or supply any other mode of non-motorized transport to get the whole family involved!

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DESSH FAMILY CONFERENCE

In conjunction with the American Society of Human Genetics Annual Meeting

DESSH families from across the U.S. descended on the American Society of Human Genetics annual meeting in Houston, TX. Families raised awareness at our DESSH advocacy booth on the exhibit hall floor and spent a day sharing and learning from one another's challenges during dedicated DESSH sessions.

 

SONGS FOR DESSH

Local musicians from the Sussex County community volunteered their time and talent to raise funds for our cause.  The impressive list of artists included professional Broadway and opera performers and soloists from the Sussex County Oratorio Society. The Glen Meadow Middle School Chorus even joined in on the fun! Songs ranged from jazz to pop and from acapella to a four piece band!

 

DASH 4 DESSH

Making a difference was a walk in the park! Over 100 walkers participated in our inaugural Dash 4 DESSH, an awareness walk and fundraiser for DeSanto-Shinawi Syndrome research. Through their support and the support of our sponsors, we raised more than $3,000 in net proceeds.

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+1 (718) 406-3842

3 Higgins Drive
Vernon, NJ 07462

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DESSH DeSanto-Shinawi Syndrome Corporation is recognized by the IRS as a 501(c)(3) tax-exempt public charity.