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.
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 some of the
nations’ top HD research scientists, clinicians, physicians and laypeople who are working day
and night to find the cure or viable treatments for our beloved JH’Dears and H’Dears.
Today, with over 30,000 listeners, and 105 Help 4 HD
episodes, I have realized that these wonderful researchers and
physicians are struggling to finance their research and care of
our community. The research funding pipeline is drying up.
Then it was revealed to the community that our mother
organization, the Huntington’s Disease Society of America,
stopped funding research in 2009/2010 and failed to inform
the very community they serve.
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.
In early March 2012, Louise Vetter (CEO of the HDSA) agreed to take part in an internview 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. I again became inundated with
hundreds of emails, Facebook messages, and phone calls. Finally, the answer came – 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 www.Research4HD.org on
May 15, 2012. For the last five months I have been organizing the website
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, not salaries and retirement funds. 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.
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