Team:New York City/Human Practices
Human Practices
Introduction to Public Engagement:
Huntington’s disease (HD) is a rare and deadly inherited disease, so our team was motivated to develop a
cure that would attack the root of the problem instead of solely relieving the symptoms. The severity of
the symptoms, along with the late onset of the disease, affects victims both mentally and physically. Thus,
we wanted to spread awareness of HD and our research to both the public and scientific community. We held
information sessions within our respective high schools to educate students on HD as well as our ongoing
research. We also participated in New York City and Long Island Teams Hope Walk of HDSA (Huntington’s
Disease Society of America) to raise awareness about Huntingtin Diease in public parks along the Hudson
River and Long Island park. We also became a member of HDSA National Youth Alliance where we connected with
other high school and college students who care about Huntington disease and participated in their 2019
annual fundraising and event organizing committee meetings and conference calls. Through direct outreach to
institutions and educational communities such as our schools, the colleges/universities in our city, and
affiliated organizations, we hoped to inspire further experimentation and interest in HD.
September 15 2018:
New York City iGEM Team started fundraising for Huntington's Disease Society of America Team Hope Walk in
New York City and joined New York City HDSA Team Hope on Hudson River Park - River 46 on Saturday September
15.
September 11, 2018:
New York City iGEM Team registered for HSG 2018: Unlocking HD Nov. 8-10, 2018, Hotel ZaZa, Museum District,
Houston, Texas
25th Anniversary Celebration
Over the past 20 years, the Huntington Study Group (HSG) has hosted an annual, internationally recognized
forum for training and education of Huntington disease (HD) researchers and for presentation of new
research findings and treatments to the worldwide community, plus much more…
September 9 2018:
New York City iGEM Team is excited to volunteer and support Huntington's Disease Society of America NY Team
Hope Walk in Long Island NY tomorrow Sunday Sep 9.
September 8 2018:
New York City iGEM Team joined as a member to Huntington Study Group, a world leader in facilitating
high-quality clinical research trials and studies in Huntington disease (HD). We have the first and largest
HD clinical research network of over 400 active and compassionate investigators, coordinators, scientists
and HD experts at over 120 HSG Credentialed Research Sites across the globe dedicated to seeking treatments
that make a difference and improving the quality of life and outcomes for families affected by HD.
August 20, 2018
New York City iGEM Team joined Steptember campaign of Cerebral Palsy Alliance Research Foundation a non
profit organization to fund the world's best research to treat, prevent and ultimately find a cure for
cerebral palsy (a generic brain disorder)
