RARE DISEASE DAY
Rare Disease Day is an international patient-driven awareness day held every year on the last day of February. Each year, we ask you to shine the light of awareness on DESSH by prominently displaying our awareness ribbon on your mailbox or front door for rare disease day. We look forward to your participation in 2023!
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!
RARE DISEASE DAY 2021 & 2022
Rare Disease Day is an international patient-driven awareness day held every year on the last day of February. In 2021, we celebrated those challenged by DeSanto-Shinawi Syndrome by selling DESSH awareness ribbons. Community members shined the light of awareness on DESSH by prominently displaying ribbons on their mailboxes or front doors for rare disease day, bringing us one step closer to a cure.
To learn how to start a DESSH fundraiser with your own ribbon campaign, click here.
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.