In 2008 when my son was diagnosed with Huntington’s disease, he asked me
to reach out and find his community. He wanted me to find stem cell research
for HD and other promising research. He wanted me to share what I learned
with the world. Help 4 HD was born. This was a turning point in my role to
advocate for my son, and the community.
|© Copyright by TheHuntingtonsPost.org. All rights reserved: 2012
In recent months, and through my own investigation, I found that there was a disconnect between
researchers and the community, so I set out to conduct live interviews with international HD research
scientists, clinicians, physicians and lay people who are working day and night to find the cure or
viable treatments for our beloved JH’Dears and H’Dears.
At Research4HD.org you can find the JHD or HD researcher, foundation or clinic of your choice. The
process is very simple - click on the “Donate Now” button and send your direct donation. Our peers
no longer need to question or worry about “if” your fundraising dollars are actually going to
researchers, foundations or clinics. By making a direct donation you will be funding research and
care, and you will be assured that your donations go directly to the hands that need it! The
response from many of our researchers, foundations, and clinics provided me with proof that this
mechanism (Research4HD.org) was necessary and wanted.
Now you have a choice. You can make a difference, and there is hope. Knowing that your donations
are actually going to HD researchers, foundations and clinics, you will be directly supporting the
process of finding a cure, treatments, and care for Huntington’s disease and Juvenile Huntington’s
disease. Please support our HD researchers, foundations and clinics.
Read the Press Release for Research4HD.org
God speed to them all, and may they find a cure quickly!
"We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less
because of that missing drop." - Mother Teresa
This news sent shockwaves throughout the entire community, and disturbed me deeply. I know
thousands of people who have been fundraising for “the cure” through HDSA events, who were
unaware of what took place. The emails and Facebook messages began flooding in. The community
wanted to know what was going on. As a mother of a child with Huntington's disease,a former
supporter of the HDSA, and having the responsibility of broadcasting a weekly radio show to my
international peers, I had to find the answers. I had to get a representative of the HDSA on the
international broadcast to discuss this urgent news.
In early March 2012, Louise Vetter (CEO of the HDSA) agreed to take part in an interview on
Help4HD News Channel. Following the live interview I had with Ms. Vetter, on March 27, 2012, it
became poignantly clear that something more had to be done. To this very day, the HDSA claims
that their Team Hope walks / runs / Cocktails for a Cure...etc, events are for "the cure", however it is
a fact that the HDSA dose not have a research program, and a majority of funds raised [via these
events] are allocated to the HDSA's general operations fund, and not towards "the cure" as they say.
[Ms. Vetter openly states that these funds go to the HDSA general operating funds and that there is
no allocated fund for research or "the cure." - sound byte.]
Today, with close to 100,000 listeners, and over 100 Help 4 HD
radio shows, I have realized that these wonderful researchers and
physicians are struggling to finance their research and care of our
community. The research funding pipeline has gone dry! More
heartbreaking was the fact that the community learned that the
HDSA was no longer funding "the cure" through their supposed
"Coalition for the Cure" program.
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Following the radio show with Ms. Vetter, I continued to receive hundreds of emails, Facebook
messages, and phone calls. Sadly, our community was put in the position to demand answers from
the HDSA. Their demands fell on deaf ears, as the HDSA failed to provide answers and proof of any
research program. The HDSA's website links to their supposed researchers are broken (links), and
proof of any research program was never brought to the forefront. Even though the truth regarding
these events came to the forefront, sadly, we continued to see community members participate in
these HDSA events. We wondered why so many have decided to allow this to be swept under the
carpet. We openly announced (and invited) Ms. Vetter or any member of the HDSA board of
directors to be our guest on a future show, however we have not heard from a single representative.
To this day, many of our amazing researchers are still awaiting an HDSA "research program" however
it does not exist. The majority of research (trials and studies) taking place for JHD/HD happens
through the Huntington Study Group (HSG).
Here's some advice:
When you make the decision to fundraise for Huntington's disease, be sure to ask the organization
the following questions:
- What is the overhead of the event?
- What will the donated money be used for, or where will it go towards?
- Are the donations collected put forth to paying old / delinquent research grants?
- Are the donations collected allocated toward new research?
- Ask to see the specific names and programs of the researchers. Be sure to inquire about their
- If an event is being held by a local chapter, will donations received stay at the chapter?
*The organization must provide all of this information to you. If they do not, then donate elsewhere.*
After everything that had transpired, and after receiving confirmation of the truth, the answer came to
me. I needed to find an avenue to direct fundraising dollars and private donations to the very people
who are going to find us a cure - our HD researchers. Our Huntington’s clinics throughout the world
and our HD foundations need our support as well. This is why I founded the first website to showcase
a wide range of Researchers, Foundations, and Clinics - all on one website! The website www.
Research4HD.org was launched on May 15, 2012.
|Listen to CEO Louise Vetter on
"Help4HD - News Channel"