|© Copyright by TheHuntingtonsPost.org. All rights reserved: 2012
My name is Katie Jackson and seven years ago I had the perfect life. I married the love of my life. We
had two beautiful children a little boy and little girl. We both had established careers and bought our
first house. I was on top of the world.
That all changed one day when we received a phone call that Mike’s father had died. My husband
hadn’t seen his father since he was very young. We learned that Mike’s father had finally lost his long
battle with Huntington’s disease. With that call, my husband decided he wanted to be tested to see if
he had inherited the fatal gene. With one simple blood draw from our doctor, our lives were about to
The doctor called and confirmed that Mike had tested positive for Huntington’s. The only word I can
use to describe that day is horrific. I fell to the floor and could not get up the whole day. Once I got
myself together, I went to the internet and started researching Huntington’s disease. I felt nauseous.
Words popped up on my computer: behavioral disturbance, hallucinations, paranoia, psychosis,
depression, suicidal thoughts, chorea, dementia, and death. The list went on and on, but I kept
reading with tears flowing down my face. Then I read something that brought me into a complete
panic attack, each child born to someone with Huntington’s disease has a 50/50 chance of inheriting
the mutated gene. That did it, my world had changed. Once a carefree and happy life, now I felt
nothing but fear. Not only is my husband going to have to battle through the pain of this horrible
disease, but my children have a 50/50 chance of inheriting his same fate.
We went to a neurologist contracted by our health care provider. That was the worst experience I
have ever had with a doctor. He literally told my husband, “You have Huntington’s disease, there is
nothing I can do for you, and you are going to die.” I saw all hope and life drain from my husband’s
eyes. As he put his head down, I put my head up. After I had a few choice words for that neurologist, I
left the office and decided it was time for me to be strong; to be strong for my husband; to be strong
for my children. I needed to hold this family together. We had two very young children and we couldn’
t fall apart.
The second we got to the parking lot, I picked up my phone and called the HDSA Northern California
Chapter. I remembered seeing their name popping up while I was searching the internet about
Huntington’s disease. The lady on the other end of the line put me on a mailing list, so I would get all
the information from the chapter. Then she gave me the single most important information ever, the
phone number to the HDSA Center of Excellence at UC Davis. UC Davis Center of Excellence has
done so much for my family. Dr. Wheelock, our neurologist at the clinic, is the most loving caring
woman I have ever met. We felt right at home at the very first visit. Dr. Wheelock showed us that she
truly cares about all of her patients and the Huntington’s community. Her Nurse Practitioner, Terry
Tempkin has given us strength in ways we didn’t think were possible. We are so thankful for Dr.
Wheelock, Terry Tempkin, and the wonderful HD team at the clinic.
I felt that even though we found the best team in the world to take care of Mike’s Huntington’s
disease, there was still nothing anyone could really do for him; no treatments, no therapies, nothing. I
felt so hopeless when it came to my husband’s illness. During the day, I was so busy with work and
our children; I didn’t have time to think about Huntington’s disease. When the sun went down and my
husband and children went to bed, that was the worst part of my day. My mind would start going crazy
about our situation. I would think about how my husband wouldn’t be around the day our children
graduated from college or how I would tell my daughter inspirational things on her wedding day that
her dad would want her to know, because he wouldn’t be with us. All of these thoughts flooded my
mind and tore at my heart. Many nights I would just cry myself to sleep. One night I picked up my
laptop and started typing away. I found myself addicted and 400 pages later I had the skeleton of my
first fictional novel “Ferris Wheel”. Instead of thinking of the reality we were living, I was able to
escape into a world that I created and could control. It was the best therapy and it was the only thing I
found at the time, which helped me cope with the day-to- day, as I watched my husband’s chorea
become more obvious.
We were always excited when May came around because we were able to go to the HDSA Northern
California Chapters conference. We would get to hear keynote speakers and learn about what was
going on with Huntington’s disease. The third conference was the most inspirational one we had ever
attended. We heard about this brilliant researcher at UC Davis who was talking about using
mesenchymal stem cells (MSC’s) for a potential therapy for people with Huntington’s disease. I sat at
the conference that day and listened to this brilliant woman speak. I couldn’t believe what I was
hearing, “The possibility of a future therapy in our Huntington’s community using stem cells.” Hearing
these words was liberating. I felt the heavy weight of this burden I had been carrying around
somewhat ease up a little that day. What I realized was I using my writing as medication for the
depression I was suffering through, but now I had something better, something that could make
Huntington’s disease a thing of my family’s past. That something was stem cells and HOPE.
The problem I have always been worried about was of course money. We are a smaller disease
compared to cancer or heart disease. Where would the money come from to fund the clinical trials?
But thanks to Dr. Wheelock at UC Davis, Huntington’s disease was their focus. How fortunate for us
that a chance meeting in an elevator brought my two heroes Dr. Wheelock and Dr. Nolta together. It
all started in an elevator one day when Dr. Nolta was touring UC Davis Health System to consider
directing the soon-to-be Institute for Regenerative Cures. Dr. Wheelock asked Dr. Nolta if she had
ever thought about using stem cells for Huntington’s disease. Dr. Nolta knew about Huntington’s
disease but had concerns about the blood/brain barrier. Dr. Wheelock invited Dr. Nolta to the clinic to
meet some of our Huntington’s families. The rest is history. Since that day, Dr. Nolta found a way to
engineer MSC’s for the treatment of Huntington’s disease and together with their teams, they have
brought us where we are today, on the way to Phase I human clinical trial for Huntington’s disease.
Many thanks to Dr. Wheelock for advocating for us that day in the elevator, Dr. Nolta for taking us on
and for letting us into her brilliant world, Vice Chancellor Dr. Claire Pomeroy and Associate Dean
Fred Meyers for supporting our quest for a cure. Huge thanks to Dr. Wheelock’s team at the HD
clinic, Terry Tempkin and everyone there for the support and care of our loved ones with Huntington’
s and a big, big thanks to Nolta’s HD team at the lab: Geralyn Annett, Gerhard Bauer and everyone
over there. Thank you for working so hard in the lab to bring cellular therapy into our lives. We
believe in it, we have great hope in it, we need it!
I was at the CIRM meeting the day ICOC voted on the grant in which UC Davis was awarded $18.9
million back in July 2012. I thank CIRM from the bottom of my heart. Without their support and
funding, this trial could not happen. Our community knows that without CIRM we would not have this
amazing opportunity to make Dr. Wheelock’s Phase I clinical trial a reality. This translates to HOPE
for the HD world, so thank you, thank you, CIRM!
One day I was talking to a dear friend who is a powerhouse patient advocate in our community. She
had just launched Research4HD.org. We decided to kick off the first fundraiser on Research4HD
using the net proceeds of my eBook “Ferris Wheel” to benefit Dr. Jan Nolta’s HD Stem Cell Program.
Our goal in this was of course to make a little money for the HD team at UC Davis lab, but we also
wanted to show Dr. Nolta we stand behind her and the team. Our community is excited about her
work with MSC’s and can’t wait for the Phase I clinical trial to begin. What I am really excited about
now is that there is hope for Huntington’s disease. Time is of the essence for all of those who suffer
from the debilitating symptoms of Huntington’s disease, but thanks to CIRM we now have HOPE.
Fundraiser Katie Jackson, author
of "Ferris Wheel"
Katie will be donating 100
percent of the net proceeds from
the sale of her book "Ferris
Wheel" and other fundraising
efforts to Dr. Jan Nolta's Lab for
the first human stem cell clinical
trial and potential treatment or
cure of Huntington's disease.
> Read More