Huntington's disease is a hereditary, degenerative, and terminal
brain disease. Huntington’s disease (HD) slowly diminishes the
affected individual's ability to walk, talk, and reason. In time, the
person with HD relies completely upon others for their personal
care. HD affects the lives of entire families - emotionally,
psychologically, socially, and economically. HD affects males,
females, and knows no ethnic and racial boundaries. Every child
of a person with Huntington's disease has a 50/50 chance of
inheriting the fatal gene.
Juvenile Huntington’s disease (JHD) affects younger individuals.
Individuals who suffer with JHD experience the same challenges
as individuals with HD, however the onset of physical and
emotional symptoms happens earlier in life. These younger
individuals experience many additional traumatic symptoms of
Huntington’s disease: epileptic seizures, adverse behaviors, and
mental dysfunctions…the list goes on. These JHD Warriors need
much more support and resources. Currently, not many of these
vital resources are available, which makes the battle so much
Current statistics specify that one out of every 10,000 American
has HD. Unfortunately, these statistics are outdated. So many
more individuals in America, and around the world, have JHD/HD
or are at risk.
Deshalamar CDC 501(c)3 of New York is
dedicated to bringing about awareness of
Huntington's Disease, and funding
research for the cure.
With your generous donations, we can
fund each of our projects and further our
mission to serve the Juvenile Huntington's
disease, and Huntington's disease
If not now, when? If not you, who?
Founded September 2011
The HD Relief Fund - Based on the feedback of the JHD/HD community, Deshalamar has instituted The HD Relief Fund. The HD Relief Fund Committee is comprised of individuals chosen by Deshalamar from the JHD/HD community. The mission of the committee is to raise funds and provide assistance to the JHD/HD community. Deshalamar has provided specific guidelines for this program. The HD Relief Fund will be awarded based on essential needs (medications, groceries, utilities). Deshalamar CDC 501(c)3 was the first non profit organization aimed at providing these direct services to the Huntington's disease community.
*This program is only available for individuals within the JHD/HD community, or directly affected caregivers.*The committee will access each applicant and award assistance to individuals as fairly and effectively as possible.*The components within the fund will be reviewed on a needs basis and/or updated quarter
Due to lack of funding, no NEW Applications are being accepted at this time.
*Assistance will be granted (when available) by Referral from participating non-profit organizations. If you are a nonprofit 501 c 3 and wish to provide referrals for your clients please contact us today.
EndHD.org was launched Feb 2012
To raise Funding for Dr. Nolta's
Research for the cure of
Walk to EndHD - to support the research efforts of Dr. Jan Nolta – UC Davis Heath System.
In 2012 we raised 14,000.00 and donated it to research. In 2014 we closed down endhd.org
Now it is easier to donate directly to Jan Nolta and Kyle Finkfor Huntington's disease and Juvenile Huntington's disease research! The updated links make it easy to donate! #CureHD #CureJHD
Here are the two links:
JHD research: https://give.ucdavis.edu/HDIS/SCNJ818
Published on May 16, 2012
Walk to End HD - EndHD.org
*Deshalamar CDC 501 (c) 3 of Brentwood, New York, thanks Marissa Gutierrez for hosting this amazing event! Her love for her son Robert, hard work and dedication made it a memorable day for many! The total amount raised for this event was $14,000.*
100% of donations are allocated for Dr. Jan Nolta's research program (UC Davis Health Care System).
Deshalamar CDC 501 (c) 3 wishes to do everything we can to help find a treatment or a cure for Huntington's disease. Since 2009, we have made it our mission to help individuals with Huntington's disease. We have been blessed to have found Dr. Jan Nolta of UC Davis Health System. Her research shows promise and hope for the Huntington's disease community!
Please to donate to Dr. Nolta's research for the treatment or the cure of Huntington's disease. Together, we can make a difference!